Feeling the Effects

Day 2 of the ATRA pills.

The headache arrived, right on schedule.

What's taken me completely by surprise is the nausea.

During my prior ATRA courses, I'd been receiving the heavy anthracycline chemo. I'd assumed the nausea then was from the anthracyclines. Apparently, the ATRA affects me that way too.

I called the cancer center to ask if other patients experience extreme nausea with ATRA too. Yes, some do.

13 days and then seven more rounds to go. Sigh.

Last Dose - Hooray!

Dad sitting next to me as I finish my last dose of Daunorubicin.

Overall, today's session went better. On the way home, I didn't need the bucket that Dad had stored in the back seat of the car, just in case... Both my arms are really sore from the strong chemical being pushed through them--the left from the IV on Monday and the right from yesterday and today. The chemo didn't leak into my flesh, but it seemed that my veins were too small to flush it throughout my circular system quickly, so they spasmed. When I received the Idarubicin in the hospital in the spring, it was injected through a PICC, so I didn't have this issue. Over the next few days, applying hot compresses to my arms should help.

Moving Past Day 1, onto Day 2 of Daunorubicin

I wish I could run, in a drop-dead sprint, through these next few weeks. Be done with this, having felt nothing more than sore calves and skinned knees from that one time I bit it when I didn't see the crack in the pavement.

Unfortunately, I haven't been able to run in years, and since any lingering tumor cells are hiding within my bone marrow, they would be traveling just as fast.

Yesterday's infusion didn't go as well as the three in September. The catheter was in the vein in my left arm correctly, so the Daunorubicin was flowing into my bloodstream, not into my flesh where it would cause damage. But the veins in my left arm had their own adverse reaction to it. The top and underside of my forearm were experiencing a burning sensation. So was my left shoulder. The nurse slowed down the injection and applied hot compresses, but I didn't begin to feel better until she'd finished the two chemo vials and had given me pain medicine.

Ten Tips for an Outpatient Chemo Infusion

As I get organized for this round of my cancer treatment, I thought I'd share a few tips for anyone who stumbles upon this link who's just begun his/her journey toward being cured.

Do I Have to Eat that Piece of Cheesecake?

Well, I could probably convince myself to force down a piece of cheesecake. The balanced meals have been tougher. I had a follow-up appointment today. Since Day 1 of the Daunorubicin two weeks ago, I've lost 5.5% of my body weight.

So Far, Only a Tropical Storm

The pain from my bone marrow regenerating has mainly occurred at night, in my back. It's been bad, but not comparable to the agony I felt last spring, which is very encouraging.

I am still feeling completely exhausted. Yesterday I napped for a total of four hours, and today I woke up at 10 a.m. On a bleak rainy day like today, taking a nap while my body heals doesn't sound so bad...

In the top left column, I've added some links to pages that will evolve. Just now, I wrote the Gratitude page. I'm sure I'm missing a lot of people I should be thanking, but I can add names over time. So much of this experience has been a blur, so I apologize if I haven't acknowledged everyone I should have. Everyone has been so amazing; we are truly blessed to know so many caring people.

If you have a good addition for the Faith and Inspiration page, please send me a note via email, Facebook, or a comment here.

Waiting for Bad Weather

 

Actually, this is more like waiting for a hurricane, but I don't want to spread a false rumor that another real storm is brewing.

After my Idarubicin chemotherapy last spring, I experienced tremendous leg pain as my bone marrow regenerated with the help of a booster drug. This morning I woke up with back pain. I told the nurse about it at my appointment today, and she said it's likely an indicator that I will be experiencing a lot more pain over the next few days as my bone marrow regenerates after being knocked out from the Duanorubicin.

The back pain reminds me of those first winds before Hurricane Irene struck. We knew we were getting bad weather, but we didn't know how bad, and there really wasn't much to do but wait for it to strike. Hurricane Irene turned out to be less severe than the media had predicted it to be. Hopefully this bone healing process turns out to be nothing more than a tropical depression.

Dear Chemo, Thanks for the Reminder

I'd begun to forget what the Idarubicin last spring had felt like. I'd been letting myself forget I'd had cancer.
This week has been an unpleasant reminder.

Today I'm still dealing with bouts of nausea and migraines, and the fatigue is starting to set in. On the bright side: the injection drug doses are done for this round. Now all I have left to do is finish the ATRA regimen and recover, which consists of perusing the TV Guide on my iPad, reading, and staring off into space. Maybe at some point I will actually turn on the television.

I have to keep remembering that this will keep me cancer-free. Soon enough this will just be a page in our family's history. Too bad our family history isn't like a real book, in which we could skip ahead to a more fun passage. Conversely, I can flip back to the great time we had in Florida two weeks ago. I'm already starting to feel better thinking about it....

Daunorubicin Day Two

Two days down, one to go in this cycle. Then I recover for three weeks. The nausea has been worse today, so the doctor put me on a stronger anti-nausea medicine before my Daunorubicin injection this afternoon. The ATRA headaches persist, but the pain killers to help with those cause nausea. Best solution I can think of is to take a nap.

Thank you to my friend, Danielle, who took me to the appointment today. She learned the hard way that because of all these medicines, I'm not in a condition to give accurate driving directions.

What's that saying? A picture's worth a thousand expletives?

At summer camp while I was a kid, Kool-Aid was called, "Bug Juice." For obvious reasons. A cousin of the drug being administered to me in the picture above has earned the nickname, "The Red Devil." Also for obvious reasons.

Daunorubicin Day One

Today I started the week of ATRA pills and the three days of Daunorubicin infusions. I already have a crushing headache from the ATRA and nausea from the Daunorubicin, but so what. Pain is temporary, and hopefully remission will be forever.

IVIG

I received the intravenous immunoglobulin this morning. When we got home, I took a two hour nap. The infusion went smoothly, though now I feel a bit like I have the flu.

Dr. Goldberg said he hasn't seen an immunoglobulin deficiency as a side effect of Arsenic Trioxide in other APL patients. So this might not be from the arsenic. Hmmm.

The extra antibodies should help me through the chemo round that starts Monday. In the beginning of October, they'll test my IgG level again. If it's still low, I'll have another infusion then. This winter we'll address what it means if my level appears to be chronically low. Not worth worrying about it now.

Blood Test Results

First and most importantly, my PCR remission test showed that I am still in remission. Fantastic!

One of the other blood tests came back showing a slight snag in my recovery. My immunoglobulin (IgG) count is low (i.e., I have an antibody defiency). This explains why my cough/cold has persisted for six weeks.

The treatment to correct the deficiency is called intravenous immunoglobulin therapy (IVIG). Over a period of six hours, I will receive an infusion of antibodies donated from between 3,000 and 10,000 healthy donors. At this time, I don't know much more than that. The registered nurse at the cancer center, who informed me of the irregular test result, said they would prefer to discuss the treatment and possible side effects with me in person.

A Bald New Approach

While in the hospital, having no hair was the "in" thing for the leukemia wing. Since I've returned home, I've been more conscious of it. Before I share my thoughts on the looks' pros and cons, here's a review of my hair's history and future:

Pre-leukemia

Cancer from Cell Phones? -Added to my Worry List

The World Health Organization has announced that cell phone use can increase possible cancer risk. I received this news alert on my iPad right after I returned home from a last-minute appointment with the oncologist. I reacted like any newbie paranoid cancer patient would: I ate a bowl of mac and cheese and three chicken nuggets and took a trip to Amazon.com. I ordered headests for each of our cell phones.

I certainly don't want a brain tumor on top of leukemia. The article also mentioned product advisories that state you shouldn't be in direct contact with the device when it's transmitting data. So does that mean I should put on gloves before hitting send on an email on my Blackberry or using my iPad? Can you get tumors in your hands? I need to do more research.

Cell phones are just one more item on my new worry list. I am now concerned about artificial sweeteners, the radon level in my basement (despite Ryan's insistence that ours is at an acceptable level), contamination of our drinking water, organic vs. non-organic fruits and veggies, and Katelyn falling off the bed. Her favorite book right now is Eight Little Monkeys. She imitates the doctor by wagging her finger and says a slurred version of "No more monkeys jumping on the bed." I'm afraid next she'll imitate the monkeys falling off the bed. Now that I'm thinking about it, I should have gotten her a helmet on Amazon while I was ordering the headsets. I might just do that when I finish writing this.

Before my diagnosis, I was moderately paranoid, but not like this. "Cancer" is scary, and it's even scarier when it's your family's reality instead of an abstract possibility.

Killing the Wicked Witch of the West (Phase Two of Treatment)

Ryan's twin brother, Derek, sent Katelyn the movie, The Wizard of Oz. We received it today. She knows the movie; it's the only full-length feature she's ever watched. One afternoon, during my hospital days, Ryan turned on a DVRed version. He needed some down time, and he received it. She sat on his lap and watched the entire movie. She cried from impatience during the commercials, even when Ryan triple fast-forwarded them.

Today I had my appointment with the head oncologist. While in the hospital, it had felt like the end goal was getting a high white blood cell count so I could go home. I just had to follow the yellow brick road, see the wizard, and I'd be whisked away. Although the doctors had mentioned the other phases of the treatment, I hadn't focused on them. Today, I was forced to do just that. We discussed Phases Two and Three. I start June 6th. The two weeks before then will be continued recovery from the treatments given to me in the hospital. The good news is that I am starting to feel better and getting back to normal in terms of energy. I can't wait to start working again.

The continued treatment schedule is more involved than I had let myself comprehend while in the hospital. To preserve my sanity, I hadn't let myself think about it. The second part of the discussion today centered on the tests for the presence of cancer throughout the treatment schedule and beyond. Today, two realities were forced upon me: 1) There are more bricks on the treatment road 2) I have to live with the fact that I have/had cancer. My life has changed. There will be the fear of bleeding/clotting that indicates Leukemia, and there will be the holding of breaths as we await the results of tests that tell me whether I am still in remission. At five years, I will be considered cured. My plan is to throw away any lingering fears that day (And clean out my closets. If I am strong enough to get over the fear of cancer, I am strong enough to get rid of that shirt from 2002.)

Despite my realizations, the meeting was very positive. In the first weeks of the disease, Dr. Goldberg, the head oncologist, had scared me about the dangers of that time period. He'd terrified me with a reference to a young woman who'd died. I had joked to the other oncologists that his name should be Dr. Gloomberg instead of Goldberg (in retrospect, maybe I shouldn't have joked about such an important person, but there were narcotics involved). Today, he said, "I heard about your nickname for me. Those things I said were to scare you to make sure you were being careful not to fall and doing everything we needed you to do during that critical time period. This is a happy meeting. You are in a good place right now. I am confident your test will come back next week showing your are in remission."

If Dr. Gloomberg is happy right now with my progress, that's how I will feel too.

The Remaining Bricks in My Road to Being Cured

The below is the basics of my treatment schedule. It assumes that my test comes back next week showing that the majority of the cancer-causing cells have been killed. The objective of the treatment is to wipe out any lingering cancer-causing cells that could cause a relapse.

- Recovery from Phase One, 2 more weeks. I am still weak and tired, but will continue to feel better. The drugs administered during my stay were very tough on my body, so not only are the bones and blood recovering, but my muscles are weak from lack of use. 

- Arsenic - 5 weeks of 5 days a week, 2 weeks off, 5 weeks of 5 days a week, 2 weeks off. This is administered through IV; is outpatient; and takes about 45 minutes to receive the dose. There are some side effects the first week, but after that, I should feel fine. I asked the doctor if this is the chemical used to kill rats. His response: "No, but actually, you are already on the drug that's used for that- Warfarin." (blood thinner) This is useful information to have in case I ever do see a rat in our house.

My doctor mentioned that he's currently treating a golf pro in this stage. The pro gives lessons and gets his treatment at the end of the day. If a pro can give lessons, it should be a breeze for me, who has a desk job.

- Daunarubicin -  3 days in a row, 1 month off, another 3 days in a row, 1 month off.  This is the chemotherapy. It is in the same family as the heavy chemo, Idarubicin, that I had in the hospital. My treatment may wind up being Idarubicin again because they are having issues with supply shortages. During these two months, I will be experiencing some side effects (like fatigue, hair loss), but they shouldn't be as severe as the first time since I will be starting off with healthy blood cells. The doctor described it as spreading weed killer on a healthy lawn to kill a few weeds. With the first round of chemo, the entire lawn was weeds. This is the two month time period during which my white blood cell counts will be low and there will be risk of infection.

- ATRA - 15 days every 3 months for 2 years. This is the maintenance phase, or Phase Three. ATRA is the second, lesser chemo drug I was on while in the hospital, and is taken in pill form. The first few days on it, until my body was acclimated to it, I had crushing headaches. The doctor said they've found this to be common with young women. Some countries, like Italy, give more doses of ATRA and have it last only one year. My doctor does it over two years because every time you restart it, the headaches comes back. There are a lot fewer restarts in his pattern than fitting it into a year with a week on/week off pattern. Aside from the occasional headaches, the two years on this drug won't affect my daily life.

Throughout these treatments, there will be additional testing to see if I am in remission.

Although I won't be considered "cured" until five years, it's the next 5-6 months, and then to a much lesser extent the following two years that will take some effort. Still, if only this were as easy as dumping a bucket of water on the Wicked Witch of the West...

The next two and a half years of treatment may not be as fast as a quick sploosh and "I'm melting, I'm melting," but the important point is that with my type of Leukemia, the doctors know how to kill it. For a disease so rare, it's amazing that they have been able to create a treatment plan with such a high success rate. I thank God the doctors have found their equivalent of a bucket of water.

Good Pain

Good pain versus bad pain. In sports, it's easier to tell them apart. Late Friday night, my first night home, it didn't occur to me that what hit me might be good pain. Of course, at the time, I wasn't thinking about anything more than how to make it stop.

The evening started great. By 6pm, I was finally home, and back with my daughter!

For the most part, Katelyn acted liked I'd never been gone. She was a little more distant (no hugs or kisses yet), but was acting very excited to have me around. She said "Mommy" a lot. I did have a weak moment when she asked me "Hat off?" I took off my black and silver stitched hat, and she cringed and backed away. She said, "Hat on," so I put it back on. She repeated the request for me to take it off, and cringed again. We went through this routine three more times. My mom's theory is that she was hoping one of the times I took off the hat, the hair would be back. It was the only time that night I needed the box of tissues.

When it was her bed time, I read her the routine two books. I asked her to pick them out, and she picked the two that we had been reading every night before this ordeal began. I am going to believe that she remembered they were special to us. As I gave her her bottle, I went through her day with her, just like I used to do, and she stared at me the whole time, like she couldn't have been happier or loved me more.

By the time Katelyn had finished her bottle, I was exhausted. My blood cell counts, particularly my red cell counts, which give you your energy, have not yet returned to normal. Plus, everyday life is so much harder than being in a hospital room, even if I was doing exercises towards the end to get my strength back. I said a prayer thanking God for getting me back home, and went to bed early.

At 2am, I woke up and thought all my bones from my pelvis to my ankles had been shattered. The most severe pain was in the knees. Out of the seven prescriptions I'd been given at discharge, none were for pain management. Ryan gave me two Tylenol. Within five minutes, it was clear we would be going back to the hospital.

I would have liked to have gone right back to the oncology floor, to the nurses who knew me and had always provided pain medication as soon as I'd needed it. (At this point, I wasn't even worried about the "why" for this pain.) Unfortunately, the admittance process doesn't work that way. I had to start in the emergency room. Ryan tried dropping me at the door to the ER. The pain was so bad, I couldn't walk, so a transport took me in a wheelchair.

For someone who had spent the last month in a culture that is paranoid of infection because of low white blood cell counts, the ER on a Friday night is a scary place. I asked the admitting clerk for a mask, and I took off my hat because I wanted any special attention I could possibly get as a "cancer patient."

Ryan joined me in the waiting room and held my hand while I whimpered (okay, fine, I was sobbing) from the worst pain I've ever felt. The clerk called my name and Ryan wheeled me to the triage nurse. Ryan later told me a woman in the waiting area who'd been complaining about allergies stood up and protested that she had arrived before me. The clerk responded, "Um, I think she's in a little more pain than you."

At first, they wheeled my chair into the middle of the crowded ER. There were too many patients to put them all in rooms. A belligerent woman nearby was being held in check by two policemen. It was her 30th birthday, and she had alcohol poisoning and was not pleased with being in the ER. Now's a good time for that cliche about life not being fair...

Ryan used the words "oncology unit," "leukemia," and "immune system" with enough staff to get them to move another patient out of a private space and move me in. Shortly thereafter, the ER doctor spoke with my oncologist and scheduled two tests. More importantly at the time, the physician's assistant started me on an IV of Dilaudid. Finally, the pain blurred away.

The two tests that I needed were an X-Ray and a vascular study (sonogram) of my legs. Since I had had clotting issues with my liver, the oncologist wanted to ensure I wasn't experiencing clotting in my legs. The ER doctor told me once these tests were completed, I would be transferred up to oncology. I told Ryan to go home; he didn't need to sit on a hard chair in that Friday night ER while I was lying on a soft bed, numb from the narcotic.

At 8am, I was moved up to oncology and readmitted. Although better than the ER, it was disheartening to be back in the oncology wing less than a day after discharge. Ryan later told me that when Katelyn woke up, she was asking for me. I felt like I had teased her by returning home, only to leave again.

The results of the test showed there were no clots. A relief! A familiar nurse continued me on the Dilaudid IV drip, in my old room. Except this time there were no pictures of Katelyn or cards on the wall to cheer me up. Later that morning, the oncologist on duty saw me. He said the pain was most likely a side effect of the Neupogen, which was the drug that stimulated my white blood cell production.

The oncologist essentially gave me two choices: 1) stay through the evening, continuing on the IV and receiving monitoring, or 2) go home with a prescription for Dilaudid in pill form. He said Dilaudid is one of the strongest narcotics, and in pill form is still multiple times stronger than Morphine (this didn't impress me, as I established earlier that Morphine is useless). Although it would have felt safe, and I would have known the pain would have been minimized, I could not stay in that hospital. I had to, needed to, get home to Katelyn. I felt like I had made a promise to her not to leave her again, and I couldn't break that promise only one day later. I took the prescription for the pills.

Katelyn was happy when my mom and I arrived home that afternoon. Saturday evening, I spent on the couch, but I was still able to play with her. I managed to do her bedtime routine of two books and her bottle. For  whatever reason, the pain worsened at night. An IV drip would have kept the medication constant. Instead, I woke every 2-3 hours with the same crushing bone pain as the night before. A pill took 30-45 minutes to kick in, during which time I tried to control my breathing, but wound up mumbling a steady stream of something that sounded like "ow." But I had kept my promise to Katelyn.

I continued taking the pain pills yesterday during the day, and by last night, the pain was manageable. Though much less, it wasn't just in my legs, but all my bones. It still is. Everything aches. I can feel it even in my cheek bones.

We went for a follow-up consultation today. They analyzed my blood and discussed the weekend with me. My white blood cell count today is 7.5k! It had jumped 6k from Friday's level of 1.5k, putting it well into the range of a healthy person's. In retrospect, all of that pain had been good pain. Basically, the bone marrow had been producing nothing during the chemotherapy, and the sudden activity when shocked into production caused the pain. My bone marrow had been crackling and sizzling as it produced an immune system for me.

I can't say that the knowledge that it was good pain would have made the past few nights any easier, given the intensity of it. But it is yet another learning experience in this journey. I can and will put up with whatever I need to in order to heal and be with my family.

Next step is the appointment with the head oncologist this Friday to lay out the plan for phase two.

Three More Weeks Here... Maybe

Once again, I heard the phrase today from an oncologist that I am "turning the corner," which is excellent news!

Though I have to admit: it's an Inception-like corner. When I ask questions about the exact status of my conditions, the answers are filled with vagaries. I may be here three more weeks, maybe longer. The clot in my liver may be permanent, or it may be able to recanalize. The blood in my lungs may be gone for good, or it may return if my cough doesn't improve. The lesions on my tongue that make it difficult to eat will disappear when my white blood cell count pops in a week, or it may take several weeks for that cell count to return. The high fevers are likely gone for good. The platelete infusion I am receiving right now will likely be one of many more to come. (In a future blog entry, I will be giving details on how to donate blood, for anyone who'd like to help me pay the favor forward.)

There are lots of positives, and I need to remember that what's around a corner is usually what you expect to find there. I am kicking this disease. Ryan and my parents have been so great, as well as the doctors and nursing staff, and today I saw Katelyn for the first time in nine days.

She has a crush on a registered nurse here named Hoshi. Throughout her visit today, she would peer from the door of the Family Lounge and call his name. Next time Katelyn comes, we will have to bring her earlier while he is still on duty. With all she's been through, I can't deny her a chance to wave and say "Hi Hoshi!"

On a final note: some of my hair has started falling out, so thank you Jen and Mom for the beautiful hats. Maybe no more of it will fall out, and I will have a great fashion collection instead of a requisite collection!

Fourth and Final Dose

Today the nurse administered the final dose of the Idarubicin. One step done!

They have warned me that the chemotherapy will cause my blood cell counts to drop the most over the next 5-6 days. Already I am feeling exhausted and achey. Last night I was up with a 102.2 fever that took 6 hours to drop. Now my temp is generally around 100+. A specialist in infectious disease said this is par for the course. He is giving me antibiotics and antivirals and monitoring me for infection.

I may not write much over the next few days as I focus on getting better. Spring planting season begins May 15. I want to be home close to then. Even if I'm not strong enough to plant the flowers, I want to pick them out and see them in our yard.

Third Dose

Earlier today the nurse gave me my third dose of the Idarubicin. Tomorow is a day off, and then the last dose is Tuesday. I am beginning to feel tired from the cumulative effect of the drug, which in some ways is good. Being on bed rest would drive anyone in insane.

When we first arrived here Friday, 4/8, the doc said the first week is the most critical for this disease, in terms of bleeding out. I pressed him for details on this. He said that for every hundred patients that arrive with my diagnosis, only 90 are still around a week later. I asked if my chances were better given my age and health. His response: "I had a woman in here two years ago your age. She complained of a headache, and an hour later she was dead." The really fun part of hearing that was that I'd called the doc in for just that reason-- a headache.

This is my tenth day, which means I am past the most dangerous period! We are so thankful for this progress. I still have to wear the bright yellow Slip Risk bracelet and matching grip socks, but I'm cool with that. They match the fashion pajamas.

Last night I developed a fever of 102.6. It was a bit of a scramble. Earlier today it climbed back to 100.8. The doctors have said this is normal as my white cell counts drop. Need to better understand how this impacts when I can have visitors outside the family.

Katelyn visited yesterday and today. Yesterday she shared her toys with me but didn't want to hug me or sit on my lap. I shouldn't have expected more. This can't be easy for her. Today she was a little better. Dad, Ryan, and I all had masks on, so at least I didn't stand out as the only one who looked weird. Thank you to Michele, Ann, and Vanessa for lending us some toys. It made it easier for me to sit and watch her investigate new things.

Also, thank you thank you to my work, Solar Capital, for the food delivery today (and the Working Moms Group and Solar for setting up a schedule for future meals). It is so kind of you to help our family. Before the offers had been made, I had been worrying that Ryan might resort to eating the four-year-old cans of black beans and cream of mushroom soup in the back of our pantry. As for Katelyn, she is very pleased to have fresh "moo" and "nu-nals."