Our Christmas Letter

December 25, 2011

Now that Christmas is here, I suppose I should get our letter written and cards in the mail! The past year has been a wild ride with many ups and downs!

Rachel has been accepted to UNCG – University of North Carolina at Greensboro. She called me in tears when she received her first scholarship letter. She is very excited about attending college and beginning her adult life. She teaches 2^nd grade Sunday School at church and serves on the Student Leadership Team for the youth group. She works very hard in school and is a member of the National Latin Honor Society and National Art Honor Society.

Rebekah is a sophomore and beginning to think about college. She wants to be a writer and editor. She is a creative, imaginative writer. She enjoys spending time with her friends and being a part of the church youth group.

Katie is in 5^th grade and is still homeschooled. She enjoys playing the piano and Irish dancing. There is an Irish pub in Raleigh where her dance academy performs about once a month. She competed in feises (pronounced feshes) in Raleigh and Charleston this year where she won several medals. She was very excited to start hard shoe dances a few months ago.

Roger continues to hold down the fort at home and run the girls to school and their activities. He has also done quite a bit of carpentry work this year which has allowed him to add a few things to his power tool collection. :-)

We were blessed to go home (Accident, MD) in June for the family reunion. Thank you to my sisters Dorothy and Juanita for making this an annual event! In September, we spent a few days in Myrtle Beach while Rachel and Rebekah were tracked out of school. It was still warm enough to get in the water and lie on the beach, but there were few people there. It was a very relaxing vacation! We spent Thanksgiving in Baltimore where many family members gathered at Dorothy's house. We enjoyed visiting the Baltimore Aquarium and eating dinner in Little Italy the Saturday after Thanksgiving. Roger also enjoyed fishing in the Gunpowder River.

Most of you receiving this letter know that I was diagnosed with chronic myelogenous leukemia on June 30 following a routine physical. I went from shock and fear at being told, “we think it's a leukemia type thing,” to giddy relief when told that the type of leukemia I have is the most treatable type, to despair when admitted to the hospital two days later, to joy at being told I could return to work and “live your life,” to disappointment when realizing how much leukemia affects my daily life in spite of being treatable and manageable. The roller coaster is beginning to level off as I adjust to living with CML. I was told that a time would come when every waking moment would not be filled with, “Oh my gosh, I have cancer!” Now that I'm reaching that point, I'm finding it difficult to remember to take my medicine. :-) It's always something, eh? If you want to read the details of the past six months and follow my future progress, I have a blog at www.myleukemiajourney.blogspot.com.

We are thankful for the many blessings we have experienced in 2011. We have felt God's presence during the valleys as well as the mountaintops. So many friends and family have supported us with meals, prayers, cards, and encouraging words. We wish all of you a happy, joy-filled 2012.

A long overdue update...

November was my best month so far and hopefully more months like that will be in my future.  I felt normal for most of the month. I traveled three times (to Washington DC for a tax conference, to Charleston, SC for Katie's dance competition, and to Baltimore for Thanksgiving with family) and didn't feel worn out from it.

On November 29, I felt myself beginning to spiral down.  During December, I have felt tired and sluggish, and I have struggled to be productive at work.  "Cancer fatigue" is different from normal fatigue in that coffee, vitamins, and rest do not offer a reprieve.  I am thankful that I am not experiencing pain, nausea, and other symptoms that often come with cancer and its treatment. But I do get frustrated when I can't be productive or do all the things I'd like to do. 

Sometimes I think that Roger will think I'm just being lazy and not wanting to help around the house, but he often tells me that I sound or look tired before I say anything about how I'm feeling.  He encourages me to take it easy and get more rest.  I am thankful that he is understanding and supportive.

We are blessed to see how God provides for us in spite of my struggles.  As most of you reading this know, I am the breadwinner for our family. But in months that I've struggled and my hours were low, a carpentry job seems to drop in Roger's lap and he is able to make up the shortfall. 

My monthly doctor appointments have become rather routine.  My blood counts have been stable for several months now.  In January, I will have my six-month appointment, so that one is a bigger deal.  I will have my pcr checked again, and we really want to see a decrease this time.

Good news, bad news

On October 28, I had my blood draw for my 3-months-on-Tasigna bloodwork.  I had to wait until November 10 for the results, but I was so busy during the wait that I didn't have time to worry about the results.  I've been busy at work, and I went to Washington, DC November 6-9 for a tax conference. Yes, it was as exciting as it sounds!

First, the bad news:

My pcr went up from 1.8% on September 28 to 2.4% on October 28.  Pcr measures the number of cancerous white blood cells, so you always want to see that number decreasing.  A three log decrease (1/1000 of the percentage at diagnosis) or .01% on the International Scale is considered a major molecular response (MMR). Even better and what every CML patient hopes for is PCRU - pcr undetectable.  Now, I didn't expect MMR or PCRU after only 3 months of treatment, but I didn't expect to see the number increasing, either.  I was very disappointed even though my oncologist assures me that it is a minor fluctuation and not something to worry about.

The more minor bad news is that the internet was going in and out while I was at the doctor's office, so the doctor didn't have access to all of my lab reports.  I think the reason he had my pcr results is because they are done by the Mayo Clinic, so the results get faxed and there is a paper copy.  All of my other labs are done in-house.

On to the good news:

The three month treatment goal is a complete hemotological response, which I have achieved.  This means:
1) My white blood cells are below 10k.
2) My platelets are below 450k.
3) I have no blasts in my peripheral blood.
4) My spleen has returned to normal size.

My hemoglobin was 12. Normal is 12-15. YAY!  Having normal hemoglobin should help somewhat with my fatigue levels.

My white blood cells are low, but the doctor didn't have the exact number.  Apparently, they are above 1k, because if they drop to 1k or below, I have to take a break from my medicine for a few weeks.

In non-cancer news, we spent the past weekend in Charleston, SC where Katie competed in the Lowcountry Feis.  A feis is an Irish dancing competition. She came away with a 3rd place medal and 2 first place medals. She was finished by lunch time, so we spent the afternoon sight seeing in Charleston. We rode a ferry to visit Fort Sumter and ate some great seafood at the Charleston Crabhouse.

October update...

On the way back from the beach on Sept 28, I was very nauseous.  We stopped at Sonic for lunch, which is usually not the best place to go when you're nauseous, but our options were limited since we were traveling and needed to make it home in time for my doctor appointment.  I ordered a chili cheese dog, of all things.  For some reason, it was the only thing on the menu that appealed to me even though I'd never eaten a chili cheese dog in all my life before then.  After I ate, the nausea subsided and I didn't give it another thought. 

That evening after my doctor appointment, the nausea returned. The next morning, it was pretty bad, so I took 1/2 of a phenergan, thinking that maybe it would be enough to get rid of the nausea without making me need a nap. It didn't help the nausea and it did make me sleepy, so I had a pretty miserable day at the office.  That evening as I was driving home, I was feeling sick again, but I noticed that I was having upper abdominal pain rather than nausea. When I got home, Katie said, "Mama, my stomach hurts really bad." I thought to myself, "Oh good. That means I just have that virus that's going around."  By bedtime, Roger was also complaining of nausea.

Friday on the way to work, I was having severe pain, so I thought maybe I should call the doctor.  My oncologist doesn't have office hours on Fridays and the nurse practitioner was leaving at noon and had a full schedule until then, but I really thought I just had a virus, so I wasn't concerned about not being seen.  The pain continued sporadically through the weekend. The most annoying part was being awakened by pain in the middle of the night and not being able to get back to sleep. I took phenergan two nights just to get back to sleep, but I wasn't really comfortable taking it for pain rather than nausea. 

The following week, I started getting concerned because Roger and Katie's symptoms subsided within 24 hours while mine lingered.  Roger kept telling me to call the doctor, and I kept saying it was probably nothing and besides, I don't have time to go to the doctor because it's fall tax season (Individual tax extensions expired on October 17.)  By Friday, I decided maybe I should call before the weekend.  So I called and got an appointment with the nurse practitioner.  She said that abdominal pain can be a side effect of Tasigna that occurs between one and six months and usually goes away within a few weeks. But she took bloodwork to check my liver and kidney function and arranged an ultrasound for Monday morning to make sure there was no organ involvement.  I had a follow up appointment on October 18, and all the tests were normal. The pain went away within a couple of days after the initial appointment, just like the NP said it might. I hope that's one side effect that doesn't return!

I had a couple weeks of being tired and feeling run-down the last half of September, but the first two weeks of October were great.  I worked 33 hours the first week and 47 the second week, both of which were more than I had worked in a week since tax season.  Maybe the stress of fall tax season boosted my adrenaline, but whatever it was, I'll take it!  By Friday evening (the 14th), I could feel the cancer fog rolling in.  It was getting worse on Saturday, but I tried fighting it off by finishing purging my closet, which I had started about six weeks earlier. 

That evening, Roger, Rebekah, Katie, and I went to Raleigh to participate in the annual Light the Night walk.  Rachel had planned to go, but she was offered a babysitting job that evening.  When we checked in, Roger, Rebekah, and Katie got supporter T-shirts and I got a survivor T-shirt.  Food was provided by sponsors of the event, including Panera Bread, Starbucks, and a few others. After we ate, we visited the photo area to have a team picture taken. Then we picked up our balloons - red for supporters, white for patients and survivors, and gold for those who were walking in memory of a loved one. The walk started after dark and the balloons had battery powered lights in them.  Deborah Morgan, a local news anchor, was the emcee for the event. We saw her standing along the side of the road during the walk, so I was able to get my picture taken with her. There were nearly 3,000 walkers this year.  Our team raised $595.  Thank you to all who donated or bought candy bars from us.  The money raised by the Light the Night walks is used for research of new and better treatments for blood cancers. I am thankful that I was able to participate in the walk and that I felt good for it.

By Sunday, the fog was in full force and I stopped fighting it.  This past week was pretty rough and I think I only worked about 15 hours. 

On Friday, Katie and I were at Classical Conversations (a tutorial program for homeschoolers), and in spite of wearing a tank top, sweater, jeans, knee socks, and a jacket, I was shaking because I was so cold.  Then my head started feeling funny - I wasn't quite dizzy, not quite light-headed, but not quite right either.  I looked around and realized that everyone else had taken off their sweaters and no-one else appeared to be cold.  I went outside and sat in the sun for awhile to try to get warm. After CC, I checked my personal and work email, made a smoothie for a quick infusion of vitamins, then went to bed for the rest of the afternoon.

I really hate days when I can't do what I plan and want to do. But there's a big difference between normal tired and cancer fatigue.  When I'm normal-tired, I can drink a cup of coffee or get a good night's sleep and it goes away.  But when I have cancer fatigue, I will sit in front of the computer trying to work, but accomplish nothing. I will look around my house and see things that need done, but I can't muster up enough energy to do anything about it. It takes longer to get moving in the mornings, and I have a short window of just a couple hours in which I can accomplish anything that requires mental exertion.  I have always worked when I've had the flu, sinus infections, headaches, whatever... but this cancer thing kicks. my. butt. 

Today was a good day.  I dropped Katie off at her dance lesson this morning and then went to Walmart to pick up a couple things because Walmart is about a 2 minute drive from the dance studio.  This afternoon we went to a beautiful outdoor wedding of a young couple from our church. Rachel and Rebekah left the reception a little early to go play Capture the Flag with the youth group at church.  We thought we were going to a party this evening, and I admit I wasn't really looking forward to it because I'm getting tired.  But Roger checked his calendar and realized that party is not until next week, so we will be able to have a quiet evening at home. I'm going  to work a little while to finish up something that I started on Thursday, then read for awhile.

Update...

I haven't posted lately, because there's not much to report.  At my oncologist appointment today, my white blood cells (that's wbc if you read my previous post :-) were up to 3.8 from 2.8 three weeks ago. Normal is 5-10, but for cancer patients, they broaden the normal range to 3.5-10.5.  My hemoglobin (hgb) was up from 10.8 to 11. Normal is 12-15.   Unfortunately, my weight is creeping up, too; it didn't get the memo that I'd prefer it go in the opposite direction. I've been drinking soda and juice the past few days, so it's back to water for me, and I will also get back in the habit of having salad for a couple of meals each week. :-)

I got used to having good days and bad days, but I have been extremely tired for the past two weeks. September 12 was a great day in which I felt clear-headed, productive, and efficient. September 13 was just the opposite; I was tired, cranky, and everything I did seemed ten times harder than it should be. I've gradually gotten better since then, but I still am worn out by the middle of the afternoon every day. After having such a good day and hoping this might become the "new normal," it hit me hard to crash so badly and for so long. My oncologist suggested that the fatigue is a side effect of the medicine I'm on. We could switch the medicine, but all TKI's have side effects, and I don't want to switch from one that's working to one that may not work as well or may have worse side effects. So we're not going to consider changing meds unless my first pcr result is less than the 3-month target.  I'll have that test done at my next appointment in a month.

In non-cancer news, Katie danced in her first feis (Irish dancing competition) on September 24 and she took 3rd place for her reel. Rachel applied to UNCG and is waiting to hear back from them. She also got her drivers license last week. Rebekah took drivers ed last week, and will be driving Thursday, Friday, and Saturday. So watch out if you see a "student driver" car in the Wake Forest/Youngsville/North Raleigh area. All of us went to Myrtle Beach for some "beach therapy" from Sunday until today. I will miss the sound of the ocean when I go to bed tonight!

A Short Lesson in Leukemia Vocabulary

After two months of having leukemia, I'm starting to learn the lingo.  For your fun and edification, here is a list of leukemia acronyms. 

ALL - acute lymphocytic leukemia
AML - acute myelogenous leukemia
BCR-ABL -  breakpoint cluster region - Abelson (used together, BCR-ABL refers to the fusion protein that is produced by the translocated genes 9 and 22, present in CML, ALL, and sometimes AML)
BMA - bone marrow aspiration
BMB - bone marrow biopsy
BMT - bone marrow transplant
CCyR - complete cytogenic response
CLL - chronic lymphocytic leukemia
CML - chronic myelogenous leukemia
CMR - complete molecular response
G - gleevec
Hem/Onc - a doctor who is both a hemotologist and oncologist
HGB - hemoglobin
MCR - major cytogenetic response
MHR - major hemotologic  response
MMR - major molecular response
Onc - an oncologist
Ph+ CML - Philadelphia chromosome positive chronic myelogenous leukemia
PCR - polymerase chain reaction
PCRU - pcr undetectable
RBC - red blood cells
SCT - stem cell transplant
TKI - tyrosine kinase inhibitor (the category of medications that is the front-line treatment for CML)
WBC - white blood cells

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.

Ups and Downs

I've had a good week, but woke up feeling crappy today. It seems like if I have a couple of good days, I have to pay for them with a couple of bad days. I put my hand on my neck this afternoon and found another swollen lymph node. After telling the NP yesterday that bone pain hasn't been a big issue, my legs and arms are achy today.  I've been kind of down and feeling sorry for myself today.

That said, I am still very much aware of all that we have to be thankful for:
I've been able to work 10-15/hrs per week from home.
My employer and coworkers have been supportive.
My family and friends are supportive.
Friends have been cooking wonderful meals for us.
Roger got a call from a contractor friend today offering him some temp work. It's even inside work with AC.
I don't have to have strong chemo. Instead, I can take meds at home.
I have not had any horrible side effects from my meds.
My oncologist is reputed to be a "super-genius" and his office is only 20 minutes from my house.

These are the flowers I received last week from my employer. Aren't they beautiful?

Today's Doctor Appointment

My white blood cell count is 3.5 and the percentage of each type of wbc is within the normal range!!!!  Four weeks ago, it was 317 and the percentage of neutrophils was way too high! Now, the concern is that my white blood cell count will drop too low.  All the counts related to red blood cells are still low, but holding steady.  The tender spot in my neck is a swollen lymph node and we are just going to keep an eye on it.

After my doctor appointment, we (Roger, Katie, and I) went to the office to drop off and pick up some files. Afterward, we went to lunch at a Chinese place near the office. The nurse practitioner had asked me how I was doing with bone pain, and Roger and I were discussing that. He asked me about the stairs at work, and I realized that when I went up the stairs, my legs didn't hurt and I didn't get short of breath. Roger said he noticed that I didn't stop on the landing to catch my breath. Wow, that is a sign of progress!!

On the way home, we stopped at the mall to pick up some calcium supplements at GNC and get my wedding rings cleaned and inspected.  My CML medicine causes osteoporosis, but I already have it, so I think I should start being serious about taking better care of my bones.  I used to take calcium every day, but I've gotten lazy about it.  I am supposed to get my rings inspected every six months to avoid invalidating the extended warranty. The jeweler politely chided me for being late. When I said last month was a little busy, he replied that everyone says that.  I didn't bother explaining that I was busy having leukemia. :-) All that walking in the mall didn't make my legs hurt or make me feel weak. It is nice to start feeling normal again. I did try to nap when we got home, but I didn't fall asleep, so I'm exhausted this evening.

Backing up a bit...

When I was in the hospital, I asked the doctor if the chemo drug was affecting me that badly. Why did I go from functioning somewhat normally on Wednesday to hospitalized by Saturday?  He said I was on the fence, and getting the diagnosis was the feather that knocked me off the fence. Once I knew I was sick and gave myself permission to give into it, I became pretty much non-functional. He said that if I hadn't gone to the doctor for a physical, I still would have been diagnosed within a month because I was close to collapsing.

Just an update

I have had more energy this week than last week. Maybe I am producing more red blood cells?

During tax season, there was a place on my neck that bothered me, but I didn't get it checked because I didn't have time. It was tender when I touched it, and it sometimes felt like something was swollen as compared to the other side of my neck. I figured it was probably a swollen lymph node, which can be serious, but can be caused by something as simple as post-nasal drip. Last week, it started hurting again in the exact same spot. I finally called the doctor's office today, and my appointment on Thursday has been changed from a "lab only" appointment to an office visit.  Please pray that it's related to the leukemia or allergies and not a symptom of anything else.

Several times, I have asked the doctor for a longer view of what to expect. When I was in the hospital, he told me to take it easy for six weeks and then we will re-evaluate.  Please pray that I will be able to return to working 25-30/hours per week by then.

He told me at one of my office visits that eventually, I will be able to do everything I could before. I've been reading some other CML blogs, and I know there are people who don't respond to medication, or they respond for awhile and then stop responding. I can't dwell on all the "what ifs," but it is scary to consider all the possibilities. Please pray that my body does respond to the medication and continues to respond for a good long time! Specifically, we want to get my blood counts normalized, then the number of cells with the BCR-ABL gene to a very low level.

CML Medications and Research

This is fascinating stuff! The ability to create targeted cancer drugs is due, at least in part, to knowledge about DNA and genes acquired from the Human Genome Project. The article doesn't mention him, but Francis Collins, MD, Director of the National Institutes of Health, was the head of the Human Genome Project and arguably the most intelligent person of our time. His TED talk giving his Christian testimony is no longer available online, but I found this interview that reflects Dr. Collins faith, intelligence, and personality.

I am taking Tasigna (Nilotinib), one of the second generation drugs discussed in this article. (Gleevec, the drug discussed in the above link, is the first generation drug.)

Being personally affected by cancer (or another disease) makes one aware of the urgency of research to continue to develop better treatments. On October 15, 2011, my family and I, along with as many friends as would like to join us, plan to walk in the Raleigh Light the Night Walk to raise funds for the Leukemia and Lymphoma Society.  All the funds raised in this event will support research on blood cancers.  Many of the drugs developed for blood cancers have been approved to treat other cancers as well. You can support or join our team at this link.  Scroll down to allocate your donation to a specific team member.  Thank you for supporting us in whatever way you can, whether by donating, walking with us, praying for us, or offering encouragement.

More about the Hospital Stay

I was glad Juanita had spent the night at the hospital with me and could meet my oncologist. He said the fevers I had could be from an infection, medication, or the leukemia. They hadn't found any infection yet, but the cultures take 48 hours. He said that I might be in the accelerated phase of CML (the 2nd phase), or I might still be in the chronic phase (the 1st phase), but I wasn't in the blast phase (the 3rd phase, which is treated more like acute leukemia and is very bad). He wanted me to stay in the hospital another day since I was still having fevers. Juanita asked him about work, and he said I should take six weeks off. He said that if I did work at all, I should avoid anything with urgent deadlines. Um, yeah, my profession is driven by deadlines.

After he left, Juanita and I looked at the menu and ordered breakfast. I wasn't very hungry, but I really needed some coffee. I was able to eat 1/2 slice of french toast and a little bit of fruit. I gave the rest to Juanita. After eating and having coffee, I felt pretty good in spite of getting very little sleep. I thought the blood transfusion must have worked to boost my energy. Juanita and I talked and watched TV.  We ordered lunch, but I couldn't eat. I choked down a couple bites, but I was gagging just to get that much down. I got back in bed under some blankets because I was cold again. Well, you guessed it. My temp dropped below normal, then starting climbing. I had to have more blood cultures every time it went over 101.5, so I couldn't have tylenol until we waited to see if it would get that high. Letting it get that high meant that I got sick and starting throwing up again.

After church, Roger, Rachel, and Katie came to the hospital along with Randy and Juanita's grandson, Kayden. My friend Angie came in shortly behind them. After Angie left, Juanita, Randy, and Kayden went to the cafeteria to give us some family time.  Rebekah wasn't there because she had left at 6:00 am to go to Kentucky on a mission trip. By this time, I was tired again, and I wished the kids could have come in the morning when I had more energy. They had never seen me very sick, and I knew it scared them to see me like this. I found out later that they started crying when they left my room.

Randy and Juanita took the kids home for supper, and Juanita made some apple pies.  Roger stayed and spent the night at the hospital with me. Around bedtime, I got chills then a fever again.  By this time, I was recognizing the cycle, and I was determined to get tylenol before I starting throwing up. I had a thermometer in my room, so I was checking my temp every 15 minutes. As soon as I developed a fever, I called the nurse, and then as soon as it got over 101.5, I called the nurse again to ask for tylenol. I was nauseous, but I managed to keep the tylenol down. As soon as the fever came down, the nausea subsided.

Since I didn't have an IV in my arm the 2nd night, I was able to sleep on my stomach and get comfortable. Just as I started drifting off to sleep, the nursing assistant came in to check my vitals. Then when I got comfortable again, a lab tech came in to draw the blood for another set of cultures. Finally, I fell asleep until the nurse came in at 2 am to give me my antibiotic medicine, but fortunately, I was able to fall right back to sleep until about 6:30 am.

Monday morning, I felt great after having a good night's sleep. The nurse covered the IV needle that was still in my arm so I could take a shower, and she brought me a clean gown. When my oncologist came in, he gave me the choice of having year-old leftover hot dogs for the 4th of July holiday in the hospital or going home, since they hadn't found any evidence of infection. Of course, I picked going home. I told him that now that I was paying attention to my body, I recognized the cycle of getting cold then hot when I spiked a fever, and I thought I'd been having the fevers for months, but I never took my temp because I didn't realize I was having fevers. He agreed that it was quite possible, in which case it was the leukemia causing the fevers.

As soon as the discharge paperwork was completed, we left the hospital. The kids were with friends, so it was just Roger and me at home. I joked, "Oh, so this is what we have to do to get the house to ourselves for a few hours - get leukemia."  By the time we got home, I was ready for a nap.

Now that I was paying attention to my body instead of trying to push through, I realized the magnitude of what I'd been fighting for so long. I had a couple of good hours in the morning, but by lunch time or early afternoon, a "fog" rolled in over my brain, I was tired, and I couldn't think. In the middle of a sentence, I'd completely forget what I was talking about. It's like trying to walk through sludge. I had been using caffeine to get through, but that wasn't working so well anymore. We'd tried medication for our daughter who has ADHD, but the one that worked upset her stomach and the other two didn't work for her. The bottles were still sitting in the medicine cabinet and I considered trying them to see if they'd help. I even mentioned it to Roger shortly before I was diagnosed, and he told not to try them because who knows how they'd affect me.

After my hospital stay, I began napping daily, sometimes twice. I am a person who normally can't fall asleep during the day unless I am utterly exhausted, so it surprised me that I could fall asleep every day. On Thursday, July 14, I had a fantastic day.  I didn't nap at all and I didn't get brain fog.  My hemoglobin that day was 11, which is low, but the highest reading I'd had since this journey began. The following day, I also didn't nap and had a great day.

My new medication, a targeted CML drug that my oncologist describes as a biological agent rather than a chemo drug, arrived on Tuesday, July 7 via FedEx.  Roger went to the door, and in addition to the medication, he had a box from ProFlowers in his hands.  We opened the box to find a dozen roses in various colors. I looked for the card and was shocked. The flowers were from a group of women that I only know online. They'd gotten together the Saturday before, and I really wanted to go, but was not up to it. Hopefully, they will have another get together soon and I'll be able to go.

By Saturday, I began feeling tired and foggy again. My oncologist had told me that the new medication would kill the abnormal cells first, then begin creating an environment where normal cells can be produced in the correct proportions. He said I might get more anemic again in the meantime, but maybe not.  At this week's appointment, my hemoglobin was down to 10.4, so that's apparently why I started feeling tired and sluggish again. I've started needing naps again, and concentration and mental exertion are difficult. The good news is that my white blood cells are down to 17k! My doctor is on vacation, but the nurse practitioner was very happy with that number. My neutrophils are still too high as a percentage of white blood cells, but that's to be expected for awhile longer.

Hospital Admission

Friday morning, I made a store list, and Juanita and I headed out to run errands. We headed to Walmart for one stop shopping. I dropped off my prescriptions while thinking that they're going to know I have cancer because I'm getting a chemo drug. While waiting for the prescriptions to be filled, we shopped for groceries. While walking through the clothing section, I saw a blouse I liked, but I put it back on the rack. I didn't want to spend any extra money since I wasn't sure of what would lie ahead financially.  Over my objections, Juanita picked it up and put it in the cart to buy for me.

We headed back to the pharmacy. Juanita told me to go sit on the bench and she would stand in line. I thought it was silly, but I went and sat down. When she got to the front of the line, I joined her since I was using my debit card to pay. I was surprised and relieved that the bill was less than $50 for all 3 prescriptions. Then we went over to the regular check out lines to pay for our groceries. Again, Juanita told me to go sit down until she got to the front of the line. I told her I'm not an invalid, but she insisted, so I went to sit.

When we left Walmart, I told her to turn right if she wanted to see where the Cancer Center is. At that, she exclaimed that we forgot to buy snacks and fruit for the staff.  She pulled into the Shell station to get gas, and when she went in to pay, I thought she was in there for a long time. She came out with a bag of snacks and fruit.  She explained that nurses remember who brings food for them and they will make sure you are well taken care of. :-).  When we arrived, the nurse manager was sitting at the reception desk, so Juanita was able to talk to her.  My sister said she knows what she's talking about and she's no bimbo.  Now Juanita would know I was in good hands when she left. :-)  I think she knew that anyway; she was very impressed with how fast I got in to see an oncologist and that he took the bone marrow biopsy at my first appointment.

When we got home, I took my first dose of chemo, then we made a late lunch. By then, I was surprised at how tired I was, and I just laid around for the rest of the day.

Rebekah wanted to find the book Twice Upon a Marigold for her friend Alex's birthday.  We hadn't found the book at Walmart and Target, so she wanted to go to Barnes & Noble. Juanita said she'd take her on Saturday. I wasn't sure that Rebekah could find the mall, so I wanted to ride along. I was really tired on Saturday, so Juanita suggested I take a nap then go along if I felt better. But it was getting later and I thought that if we were going to go, we should just go. So Juanita, Rebekah, Katie and I piled in Juanita's car and headed to the mall. She dropped me off at the B&N door, which I thought was a  little silly because I was capable of walking across the parking lot! But inside B&N, I started getting tired pretty quickly. I found a place to sit while the kids and Juanita looked for books. We didn't stay long, but I was surprised at how exhausted I felt. We headed to the car and I said I'd walk instead of waiting for Juanita to bring the car to the door. In the parking lot, we ran into my friend Angie and her girls. We hugged and talked about how shocking it was that I have leukemia. Angie said, "So I guess you won't be in church tomorrow," to which I responded, "Yeah, I'll be there." Silly me.

We headed home and Juanita started supper. I laid on the couch and Katie sat beside me looking concerned and rubbing my shoulders. When supper was ready, I said I'd come to the table, but I couldn't muster the energy to get up.  I said I'd be over in a little bit and they should go ahead and start without me. Then I decided I wasn't hungry anyway and I'd just stay on the couch. Juanita wanted me to eat something, so I said they could bring me half an ear of corn. I sat up on the couch to eat it, then laid down again. By this time, I was freezing and someone brought me a blanket. Roger thought I felt warm and went looking for a thermometer. He couldn't find one, so he and Randy drove to Walmart to buy one. They finally returned and I had a temp of 102.2.  They called my oncologist and he said we should go to the ER in case I had an infection.

I packed a bag in case I got admitted. Totally weird for me, I didn't bring a book because I didn't feel up to reading. The scrambling around to pack a bag kind of jolted me into having more energy (the tylenol probably helped too), and I started thinking that it was probably silly for us to go to the ER. The triage nurse was a cancer survivor who obviously had a passion for encouraging and educating cancer/chemo patients, so we were in triage for a long time. Afterward, they told me I could stay in the triage waiting area so I wouldn't be exposed to so many other people.

In the ER, they took a lot of blood, chest x-rays, and started an IV. The funniest moment was when the ER doctor palpated my abdomen and said, "That's a big spleen you've got there."  When my bloodwork came back, they spoke to my oncologist and he told them to admit me for 2 units of blood because my hemoglobin was down to 6.5. Kind of explains why I had no energy!  The ER nurse thought my wbc was 240 (two hundred forty, no thousands) and she came rushing in with a mask for me to wear. We all told her that it was 240 thousand, not 240, but she didn't believe us. My sister is an ER nurse and asked to see the report. They pulled it up on the computer and my sister showed her where it said 240, normal 5-10, measured in thousands, but she still didn't believe it was 240,000 until she walked down to the lab and talked to a tech. While she was gone, I said she was probably confused because she'd never seen a wbc count that high.  When she came back, she said the highest wbc count she'd seen was 90-something thousand, and that person was so sick, she didn't realize it could go as high as mine.

When I was being wheeled to my room, I was watching the signs and realized that I was being taken to the cancer center. Inside, I was thinking that I don't want to go there because that's where really sick people are. I didn't want to think of myself as a cancer patient.

In my room, I moved from the gurney to my bed. I was very cold, so a nurse brought me a warm blanket. There was a flurry of activity as my nurse checked my history, meds, and vitals. My temp was below normal, but Juanita suspected that I was going to spike another fever. Sure enough, my temp went up to 101. My nurse brought me benadryl (for the blood transfusion) and tylenol. A few minutes later, I got nauseous and Juanita found a basin in case I got sick. Then I started throwing up. My nurse gave me a shot of compazine in my IV, then gave me more tylenol and I managed to keep it down. They had to wait for my temp to drop below 100 before starting the transfusion, so they checked my temp often until it got below 100. Every time I started to drift off, someone came in to take more blood, check my vitals, or ask me how many times I used the bathroom, so I never did fall asleep. I wondered if this was going to be my life with leukemia - sick all the time, in and out of the hospital. I finally fell asleep about 7 am, only to be awoken at 8:20 by my oncologist.

Telling the Kids

After my oncologist appointment, Roger, Rachel, Rebekah, and I were home. We can't even remember where Katie was or who brought her home. Maybe she was swimming with her friend Sophie. We decided to go ahead and tell Rachel and Rebekah, so I got the papers the doctor used to explain it to me and tried to give them the same explanation. Like me, they didn't like hearing words like leukemia and cancer, but they were relieved to know that I am not dying. 

As we were finishing up, our friend Sabrina stopped by to borrow our portable DVD player for her family's house-hunting trip to Tennessee. I wasn't sure how to fit, "Today I found out that I have leukemia" into small talk, so I didn't say anything.

When Katie came home, I gave her a more simplified explanation. She was concerned to hear that I have a type of cancer, but I reassured her that I wasn't going to die from it. I hoped this was true, since it would take awhile to get the biopsy results to confirm the diagnosis.

My sister Juanita had told me she and her boyfriend would be down after work, but I wasn't sure if they were coming on Thursday or Friday. When I talked to her after the oncologist appointment, they were loading the car and pulling out. I told Roger they were on their way, and we tried to straighten up the house a little bit. Everything was happening so fast and Roger thought it would be better if they waited and came down a different weekend. But when I had talked to Juanita that afternoon and told her she didn't have to come down this weekend and we might need her more later on, I sensed her need to be with me. And truthfully, I wanted her here, too. They wouldn't arrive until the middle of the night, so we left the light on and the door unlocked and went on to bed.  It had been a long, exhausting day.

First Oncology Visit

The afternoon dragged on. My second sister called and said our Mom was sitting in the waiting room at her office. We had decided not to tell her anything until I had more information, but my sister asked me if she should go ahead and tell her so she'd get the news in person. I said yes. Roger called one of the pastors at church, but told him to keep it among the staff until we knew more.

Rebekah was planning to go to a movie and dinner with the youth group Thursday afternoon, and the theater is near the oncology office, so we decided I would drop her off. I told her I had a meeting to go to. We arrived early, so I waited with her until someone else from church arrived. I was supposed to be at the Cancer Center at 3:30 for my 4:00 appointment, but I didn't arrive until 3:45.  I walked into the building and saw a door leading to the Cancer Center, but it was marked for employees only.  I went to the registration desk, but no-one was manning it. I was already stressed out, and this wasn't helping.  Finally, a nurse who was leaving for the day walked by and told me she could show me where the entrance to the Cancer Center is.  There is a separate outside entrance.

I began filling out the stack of new patient paperwork. I wasn't quite finished with it when I was called back to the lab. Unlike most doctor offices, everyone who assisted in my care told me their names. Since cancer patients usually see their health care providers a lot, maybe they put more priority on being personable and personal. I was composed until Brenda started drawing blood, then I began fighting tears. She quickly and effectively distracted me with small talk about family and where I was from. I was taken to an exam room where I continued filling out my medical history form. The nursing assistant came and took my vitals.  My blood pressure was high and she asked if I was nervous.  First oncology visit - yeah, I was nervous.  She asked if I wanted anything to drink while I waited and I asked for water. She even refilled it several times during the wait.

After awhile, the nurse manager came by and apologized for the wait and asked if I needed a blanket or anything. I was getting cold. The blanket they brought had been warmed and felt really good. Finally, Dr. Wehbie came in and introduced himself.  He got right to business and told me I have leukemia. He explained some details about what leukemia is and the various types of leukemia.  He said that based on my bloodwork, he thinks I have chronic myelogenous leukemia and circled CML on the paper in front of him. I asked if, in terms of having leukemia, having CML is good or bad. He said it's good because the treatment for CML has been revolutionized in the past 10-20 years. He added that if it was acute leukemia, he would send me straight to the hospital from his office. He went and got some booklets about CML and told me he'd call later in the evening to give me a quiz on them. :-)  My emotions went from one end of the spectrum to the other upon finding out that I had a "good" leukemia and wasn't going to die any time soon, at least not from leukemia. I felt almost giddy with relief.

Next, I had a bone marrow biopsy. I've heard how painful they are, so I was not looking forward to it. I was relieved when the pain level was similar to having a cavity filled. The numbing shot was worse than the actual procedure. It felt like they were using a big, manual drill, and I wished I could see what they doing. While they worked, Dr. Wehbie and Brenda talked about the bone marrow and blood tests that needed to be done. I'd never heard of most of the tests they mentioned. I left with three prescriptions: a chemo drug, anti-nausea/vomiting medicine, and a drug to reduce the uric acid in my body. 

By the time I left the Cancer Center, I thought Rebekah might be finished with dinner, so I drove over to check on her. I parked and called Roger and my sisters before I went in the restaurant. I found Rebekah still eating her dinner, so I bought some water and sat down to wait for her. She noticed that I'd had more blood drawn - from both arms this time - and said she thought I went to a meeting and asked why I went back to the doctor.  I told her some of my bloodwork on Wednesday was wacky, so they wanted to do some additional tests.  When Roger picked Rachel up from work, she asked where I was, and he told her I was at the doctor.  Both girls were beginning to suspect that something bad was going on.

The Phone Call

Thursday morning, the phone rang. My doctor's office showed up in the caller ID. They couldn't have my bloodwork back already; my PA said it might take a week because of the holiday. I answered the phone apprehensively. A friend from church and a nurse for one of the doctors said that the doctor wanted to talk to me and Roger today. I asked what time, and she said as soon as we could get there. I hung up the phone and fought panic. I was thinking maybe diabetes or even renal disease.

When we got to the doctor's office, they took us directly to an exam room through the exit instead of the waiting room.  We found some magazines to read to try to distract ourselves from our feelings of impending doom. We had to wait for the doctor to finish with a patient, and the wait was interminable.  Finally, he came in and I think he was even more nervous than we were. He asked how we were doing. How do you answer that question in that situation? I knew he was about to tell us how I was doing, and it wasn't as well as I thought. Then he asked if we had any questions. Yes: Why are we here?!  Finally, he got down to business. When a lab gets a critical reading, they have to notify the doctor's office immediately instead of waiting for all the results to be completed. LabCorp had called our doctor's office that morning because my white blood cells were in the critical range. The faxed report showed a reading of 317 (measured in thousands). I didn't know what normal was, but critical range was written in bold italics. Two words came into my mind: infection and leukemia. The second was too much to even consider so I pushed it back and said infection. The doctor said that if I had an infection with a wbc count that high, I would be laid out prostrate, not on my feet. He finally said the dreaded word: We think it's a leukemia-type thing.

Tears came to my eyes and he handed me a box of tissues. I continued fighting panic. He was a family doctor, not an oncologist. It looked bad, but this was not an official diagnosis. Maybe it was all a big mistake. They had already made an appointment for me with an oncologist at 3:30 that afternoon.

As we left the doctor's office, I told Roger that I needed to go to the office and get my computer and some files. It was the last day of the month, and I needed to work and boost my hours, but clearly I wasn't going to work in the office. We called home to let Rebekah and Katie know we were going to run down to the office, but we'd be home soon.

I called my oldest sister because she'd been severely anemic when she was around my age. I asked her if her white blood cells had been high then. She said no. I told her mine were 317. She said normal is 5-10 thousand so yours are a little low. I said no, they're 317, not 3.17. She asked incredulously, "317 thousand?????" I said yes. The shock in her voice followed by silence spoke volumes. I left a message for another sister. 

At the office, the receptionist took one look at me and asked if everything was okay. I teared up and told her they think I have leukemia. She hugged me and asked if there was anything she could do. Before we left, she wrote her cell phone number on one of her business cards and handed it to Roger.

I grabbed a few files and papers to delegate to other people since I knew there was a possibility I wouldn't be in the office for a while. I put a couple of files in a box to bring home and put my laptop in its case. A CPA who had been at lunch came in, hugged me, and murmured how sorry she was. Both partners were at lunch. I felt like I should tell them something, but yet I had nothing but possibilities and uncertainties to share at that point.

My cell phone rang and it was my second sister. She had talked to our older sister and was crying. Again, this was not a good sign. She gave me her fax number and told me to fax her the lab report. When I talked her later at home, she said the doctor she works for said it's probably either leukemia or multiple myeloma.

On the drive home, Roger and I dealt with leukemia the way we deal with most things: humor. Between tears and conversation about wills, jobs, homeschooling, and guardianship (in case I died and then something happened to him too), we cracked cancer jokes and laughed. We stopped at Chick-Fil-A to get lunch since we were both starving. I ate a few waffle fries, but I couldn't eat my sandwich in spite of my hunger.

We decided not to tell the kids anything until we had more information. In order to avoid having to offer explanations, we decided that I would go alone to my oncologist appointment so that Roger could drive the girls to their planned activities and pick Rachel up from work on time.

At home, I turned on my computer and checked my office email, but I couldn't concentrate to do anything else productive. I just wanted my appointment time to arrive so that we could get some answers and move on with whatever would come next.

Doctor Appointments

After tax season, I made appointments for an eye exam and a physical.  I got an eye appointment pretty quickly, but I couldn't get an appointment for my physical until June 29th. My insurance plan year starts over on August 1, and since I usually don't go to the doctor enough to meet my deductible, I wanted to make sure I got all my appointments done by July 31.  I knew I would meet the deductible this year since I was due for an updated bone density test, so I wanted to avoid having to start a new deductible in August.

The eye exam was worrisome because I had tiny aneurysms and hemorrhages in both eyes. The doctor confirmed that I don't have diabetes, then asked me if I'd recently strained myself by lifting something heavy or coughing or sneezing excessively.  He asked if I'd been in a wreck in the past couple of weeks. The answer to all of his questions was no, but he was quite concerned.  He said that we'd hold off on running tests in case I'd strained myself and forgotten it, but if the status was the same in a few weeks, I'd need to have angiograms of my eyes to find out what was causing the problem.  He gave me a grid to look at daily one eye at a time, and said that if the way the grid looked changed, I should come in immediately rather than waiting for my follow up appointment. I did some googling and found out that I might need to have laser surgery, depending on the cause of the problem. Then I remembered that we'd had the carpet cleaned at work, and I had to lift a heavy box onto my desk to clear the floor in my office.  I had some peace of mind, thinking that I'd strained myself and forgotten about it.

Finally, the date of my physical rolled around.  My email to make the appointment and my email reminder both said that my appointment was at 8:20.  I am not a morning person, so I wasn't crazy about an 8:20 appointment, but I know my PA likes to schedule physicals first thing in the morning.  When I arrived, they had me in the computer at 9:20, and there were already two people ahead of me. I couldn't drink my coffee until they drew my blood, so I was quite annoyed at being told to 1) get up early to be there at 8:20, then 2) sit and waste an hour.  I asked if I could at least get my blood drawn so I could drink my coffee.  The coffee soothed my irritation while I waited to see my PA.

We discussed my fatigue and decided on some additional bloodwork. When the PA palpated my abdomen, she thought my spleen felt swollen. Then I thought to mention the swelling in my feet and legs during tax season. She pressed on my legs and said they were swollen now.  That was a surprise, since they weren't swollen enough to notice visually.  She left the room while I got dressed, and came back with my preliminary labwork. There was a lot of protein in my urine and I was very anemic, but the lab couldn't read my CBC.  I went back to the lab to give another vial of blood, but they still couldn't get a reading. I asked the lab tech what could cause that, and she said maybe the machine didn't like the texture of my blood or any number of things.  She showed me that in comparison with a vial of blood from another patient, my blood was very thin.  I thought that was strange, because I'd noticed that my blood was coming out much slower than normal. She said the outside lab has better equipment and they would surely be able to get a reading.

My PA added a bunch more tests to my bloodwork and said she suspected something metabolic. I asked about getting an iron supplement, but she said that if I'm really that anemic, I need prescription iron. She wasn't sure whether to trust the numbers on the preliminary report since the lab couldn't get a CBC reading, so she said we'd wait for the report from the outside lab before deciding on additional tests and prescriptions.  I got my referral for the bone density test and went on to work, expecting not to hear anything else until after the July 4 holiday.  The radiology place called me that afternoon and we scheduled the bone density test for July 5.

Before the Diagnosis

I have been a working mom of three for a long time. I homeschooled all three while working for six years, then two of them for two more years. I continued my dyslexic daughter's reading lessons even after Roger took over the other homeschool subjects. Fatigue is nothing new. Every time I go to the doctor, I complain of fatigue. My thyroid results always come back normal. Not low normal, really normal.

A few years ago, I put on too much weight, causing my blood pressure and cholesterol to creep up. Other than that, my vital signs and bloodwork were normal. I changed my diet to include fewer carbs and fewer seconds and lost 15 pounds. I was sure this would result in healthier cholesterol and bp levels, and for a while I even felt healthier. My endo doctor had told me not to lose weight since a little excess weight helps protect the bones from breaking in osteoporosis patients, but I decided my high cholesterol and bp warranted losing some weight anyway.

When my middle daughter started high school and we only had one student at home, and Roger took over most of the homeschool duties, my stress level was significantly reduced. Again, I felt healthier and less fatigued, at least for a few months.

I normally go to the doctor for a physical every other year. Last year, I just never got around to it. I always seemed to be so behind, and I struggled to get my hours in at work even though I work part time outside of tax season. The running mantra in my mind was, "I just have to get my act together. I have to stay focused and concentrate."

Then during tax season, it was easier to grab a handful of chips or pop some microwave popcorn than to make a salad. My healthier diet fell by the wayside. Yet, I began losing weight again. I thought that reducing carbs, even temporarily, must have really jumpstarted my metabolism. By summer, I had lost another 10 pounds while eating whatever I wanted. When tax season started, I'd been exercising pretty regularly, but by the middle of February, that fell by the wayside, too. Losing weight without dieting and without exercising is every woman's fantasy, right? I sure wasn't complaining.

I have a tendency to kick off my shoes while I'm at work. At some point during tax season, I noticed that it was hard to get my shoes back on at night before I went home. I'd go home and take my socks off, and see that my feet and ankles were swollen, and some nights, my legs were also swollen. By morning, the swelling was reduced, and I'd think to myself that I need to get up and walk around more rather than sitting at my desk for 12 hours straight.

Then the night sweats started. I'd be freezing when I got in bed, 1/2 hour later I'd kick the blankets off, then in the middle of the night, I'd wake up soaked in sweat. I thought it was aging. After all, I did turn 47 in January.

I noticed my fingernails were peeling and I had to keep them cut short. I thought it was because I'd stopped taking fish oil supplements.

I often carry a box of work and my laptop when I go to work, because I work at home some days. I have to climb one flight of stairs. Some days, I had to stop and catch my breath before opening the door to go into the office. I didn't want anyone to see me struggling for breath after climbing one flight of stairs. I'd think to myself that I am so out of shape and I really need to start exercising again.

After tax season, I should have had more time and more energy. But I didn't. I couldn't focus or concentrate, so it was taking me 10-12 hours to work 6. By lunchtime, I felt a fog come over my brain, and I'd try to push through it with caffeine. Some days, caffeine worked to lift the fog and some days it didn't. I continued blaming myself, telling myself I needed to force myself to concentrate. I thought aging was making me lazy. At home, I was no longer helping much at all with laundry, cooking, or other chores. I just couldn't find the time or energy.

Then in June, we went to Maryland for our annual family reunion. I had lots of time to rest and relax. Instead of coming back on Sunday and returning to work on Monday, we came back on Wednesday and had some time to relax at home before returning to work. I noticed that my left hip was hurting a little bit, and it felt deep in the bone, not muscle pain. I worried a bit about my bone density numbers, but since I knew I'd be getting an updated bone density test soon, I figured there was no point in worrying until the results came back. That Monday, I had a good day at work. I was focused and got a lot done. That was my last good day. Tuesday, it was the same old routine - work 10 minutes, get distracted for 10 minutes.

By this point, if I'd seen the lists of symptoms for chronic myelogenous leukemia and anemia side by side, I would have realized that I had all the symptoms of both. Of course, I would have thought I was being a hypochondriac and I wouldn't have considered that I might actually have a serious illness. I was about to find out, though.

The Beginning

Leukemia. The word invokes images of loss. Hair loss. Weight loss. Job loss. Energy loss. Normalcy loss. Loss of life. Children losing their mother. A husband losing his wife.

Cancer. Not just any cancer. An aggressive, deadly cancer. Remission maybe. But remission can end - today, next week, next month, next year. A guillotine waiting to fall.

Planning. Wills. Guardianship. Job. How much time?

How could I have leukemia and not even know I was sick? Sure, I was having some symptoms. But not symptoms of anything serious. Not cancer.