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.