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.