Tuesday, May 31, 2011

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.

Friday, May 27, 2011

Wanted: Survivors' Tricks of the Trade

After a doctor's appointment this morning, I stopped at a nearby boutique that radiated pink. Picture Lily Pulitzer, Trollbeads, and flip-flop shaped ceramic appetizer trays. I loved it. It was the perfect setting after being in a doctor's office. That said, if Rob had accompanied me, he probably would have needed to watch a Twins double header baseball game to recover.

More uplifting than the brightly flowered decor was the discovery that the owner is a breast cancer survivor. She was diagnosed in 2009, and is in great shape now- physically and mentally. She had so many encouraging words for me, I wish I'd written them down, but she said she would post some of them here.

Throughout this experience, I have learned of personal accounts of other cancer survivors, and there are so many more survivors out there. Their successes, whichever phase they are in- treatment, remission, cured- are inspirational to me.

I try to be positive in this blog, but I definitely have dark moments. When I am rolling up my sleeve June 6th for the first dose of Arsenic to be pumped into my veins, or when I am awaiting the results of my PCR remission tests (the more accurate test that needs to show zero cancerous cells), it would be nice to read some encouraging advice/stories from those who have "been there done that."

Wednesday, May 25, 2011

FISH (Remission Test) Result

I received the call today with the result from my first test for remission. It was clean! I am in remission!

Woo-hoo! Oh yeah! Hot diggity dog! (Insert celebration dance here. Heck, I'll even do the Macarena if someone plays the song.)

My parents, Rob, and I are so thankful for this result. Thank you everyone for your prayers and support.

Now comes Phase Two (laid out in the "Killing the Wicked Witch of the West" blog entry), which starts June 6th. The objective of Phases Two and Three is to keep me in remission. There will be PCR remission tests every three months or so at first, and then gradually more spaced out until I hit the 5 year Cured mark. These need to show zero cancerous cells, whereas a few in this first FISH test was okay because they should get wiped out with the rest of treatment.

But before I focus on Phase Two, this milestone deserves some chocolate cake.

Tuesday, May 24, 2011


Tomorrow I receive the results of my FISH test. It is the first test to see if I am in remission. So when I say, "Go fish," I don't actually mean "Grab a pole and some bait," although that's exactly what I intend to do the first chance I get. What I mean is: "Go FISH Go! Be negative for the cancerous cells."

At this stage, a few cancerous cells in my blood is okay. The purpose of Phase Two of treatment is to wipe out any bone marrow cells still producing cancerous descendants that the first round of chemo missed. A lot of cancerous cells, which would be evident in the FISH test, would be a bad thing. Last Friday, the oncologist explained the next steps if I am not in remission. Hearing it once was enough. There's no point in thinking about it today because it's not going to happen.

I am approaching the test result as simply getting proof that I am in remission, instead of viewing it as a diagnostic tool with two possible outcomes.

That said, am I nervous? Yes. Why else last night would I have eaten seven of Jackie's oatmeal chocolate chip cookies, each the size of my palm. (They are delicious, but normally I would have stopped at four.)

I am comforted by the oncologist's prediction last Friday. He said that my blood test numbers at the time of diagnosis placed me in the Low Risk category of the three risk categories for AML APL (M3) Leukemia, and APL has the highest cure rate (9 out of 10) for those who survive the first month out of all the types of leukemia. He has had a very high success rate with his patients. Given my risk category, blood counts now, and that I survived the hardest period- that first month- he's confident this first test should show I'm in remission. I'm putting my money on the professional's opinion.

Once I get my favorable test result, I'll be on track for Phase Two of the treatment to begin June 6th. Going forward, I will periodically be tested to see if I'm still in remission with a PCR test. This is a more accurate test, for which the result needs to show ZERO cancerous cells (a single cancerous cell could multiply into a problem). Each of these tests will be one step closer to reaching "Cured" status.

If any of the tests, including this first one, come back with a positive result, I will have to have another bone marrow biopsy to confirm the presence of the bad bone marrow cells. This was my least favorite experience during my hospital stay. On the bright side, I made the four doctors/residents in the room laugh during it. I don't want to make the squeamish squirm, so won't give detail, but the procedure hurt, and the sound of the instrument made it worse. I was holding Ryan's hand and trying to maintain a controlled breathing pattern. To do so, I asked Ryan to begin counting for me. He began with one, and instead of  starting back at one when he reached ten or twenty, he kept going. As the doctor worked, I heard him mention needing a third sample. Meanwhile, Ryan had reached 63. I snapped, "Ryan, we do not need to know how LONG this is taking. Count to ten and repeat." The doctors laughed at this. Normally, I would feel proud of myself for making the room laugh. Instead, I worried the distraction would add a few seconds to the length of the procedure.

As silly as this sounds, I want the FISH test and the periodic PCR tests to show I am in remission as much so I can avoid another bone marrow biopsy as for the remission status itself. It is easier to allow myself to fear something small than to fear something big.

In Conclusion, Go FISH Go!
Praying for a good result tomorrow.

*** Below is a side note, and an opportunity for me to throw around some big words. Also a good time for anyone not interested in science to surf on over to http://www.espn.com/ or http://www.perezhilton.com/.

 - How APL develops: Chromosomes 15 and 17 swap material in a developing marrow cell.

The abnormal marrow cell produces a leukemic cell, which multiplies into 11 billion more cells.  These cells, called "leukemic blasts," do not function normally. They grow and survive better than normal cells and block the production of normal cells. Thus, given that one cancerous cell can multiple into 11 billion more, all of my PCR tests in the future need to show zero leukemic cells in order for me to be considered in complete molecular remission.

Since the leukemic blood cells originated from the abnormal marrow cell, they also have the swapped 15 and 17 chromosome material. Thus the two test described below can detect the abnormality from a blood sample.

- FISH stands for "fluorescent in situ hybridization." In the test, DNA probes tagged with flourescent molecules that emit light of different wavelengths (and different colors) are bound to the targeted chromosomes within the blood cells. The chromosomes thus flouresce in color. By using different colors, the scientist can tell if the two chromosomes (15 &17) have traded genetic material. Basically, if the scientist use a green marker for chromosome 15 green and and a red marker for chromosome 17, there should be no red on chromosome 15 and no green on chromosome 17. Swapped material in the blood cells indicates the presence of marrow cells with the swapped material that are continuing to produce those cancerous blood cells identified in the test. There is a 3-4% chance for a false positive with this test.

The picture above shows how the the pairs of chromosomes 15 and 17, within their cells, would look under the microscope once they've been tagged. If green and red are next to each other (meaning there was a swap/translocation), then the probe creates a yellow flourescent overlap. The genetist looks for the presence of yellow, which in the picture appears in the two bracketed cells. Yellow is now my least favorite color.
- PCR stands for "polymerase chain reacton." The technique makes multiple copies of trace amounts of DNA or RNA so that the specific DNA or RNA within the chromosomes can be studied. This makes it possible for the scientists to use engineered probes to find the targeted marker that exists on any abornmal blood cells (which would indicate there are still marrow cells with genetic material on chromosomes 15 and 17 swapped, producing cancerous blood cells). The test can detect the presence of one blood cancer cell among 500,000 to 1 million blood cells. (It is more accurate than FISH, but given I likely still have some cancerous cells pre Phase Two treatment, it would be pointless to do this test now.)

- My mother, who is an Advanced Placement Biology teacher
- "Acute Myeloid Leukemia," published by The Leukemia and Lymphoma Society. The explanations of the medical terms have been very helpful, and there are some direct references to my subtype, APL (M3).

Friday, May 20, 2011

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.

Monday, May 16, 2011

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.

Friday, May 13, 2011

Lucky Friday the 13th - Going Home!

My white blood cell count is 1.5k! With the right type of cells - the disease fighting Neutrophils instead of the immature Blasts that are considered the cancer. The oncologist is working with the other doctors and my nurse to have me discharged this afternoon!

After a total of 39 nights in hospitals, it will feel so good to be at home and with my family.

The next week will be spent recovering, and then I have a consultation with the head oncologist on Friday to discuss phase two.

I am so happy, and thankful God has been listening to our prayers.

Thursday, May 12, 2011

Fingerprints on Glass

Today is a special day. An angel is turning five years old. She is Audra's and Michael's Princess Sylvie.

I continue to be amazed by how supportive Audra and Michael have been since my diagnosis. Their courage and kindness have been a blessing to our family. Their daughter, Sylvie, was cured of cancer in the pediatric ward of this same hospital.

Audra has been giving me both practical advice and emotional support that can come only from someone who has gone through what they have. During the early, scariest days of this, Audra knew exactly how to pull me through.

As great as it's been, Audra's and Michael's support has not been their biggest gift to me. They've been sharing their sweet angel with me. Audra and Michael, she should be with you in person today, licking the frosting from her princess birthday cake. Life really can suck.

I am so sorry Sylvie isn't with you to open her gifts, but I can feel her presence in my room. During the tough times, she has reminded me that if she could do it, so can I. I think about her a lot. How could someone, three years old, so small and sweet, endure this experience? But she did. Even though she was taken from you later, she did BEAT cancer. For that, she has been giving me strength.

Fingerprints on Glass

Small smudges on my window,
A mark from a little nose.
Last night, an angel
Was watching the city lights sparkle.

She comes to my room
When I need her,
And even when I don't.

When I'm scared,
She whispers stories,
In a voice sweet and pure,
Of princesses in glass towers.

When I cry,
Her small hands
Gather my tears,
And turn them into rainbows.

When I smile
She is already smiling,
With a look as bright
As her glitter and stickers.

While I sleep
She visits her friends here,
And then home she soars,
Where she's loved as the precious daughter she is.

The Pop!!!

It's not easy to sleep in a hospital, between the vital sign checks, blood draws, and chatter in the hall. I generally fall asleep around 10:30 and am awakened between 2:00am and 4:00am. There have been a few nights I've fallen back asleep. A few. On most, I lie awake in the semi-dark, thinking.

Once the sun rises, sometimes I fall back asleep. But that is when the "brigade" arrives. First comes the guy who empties the linens container. Then the guy who changes the Biowaste box. The woman for the regular garbage arrives next. Then the man with the mop. Then the woman with the mop. (I keep meaning to ask why the mopped floor needs to be mopped.) The nurse checks my vitals and lets me know if I'll need any transfusions during the day, based on the earlier blood draw. And finally, the nurse's assistant enters with the scale and forces me to get out of bed, just in case I'm not awake yet.

In vain, I try to sleep through this brigade. This morning, I almost offered to mop the floor for a third round myself. My nurse had come in and handed me my lab results, with the white blood cell count line highlighted yellow. IT POPPED!!! The level went from 0.4k yesterday to 0.8k today. If it's above 1.0k tomorrow, with the needed Neutrophils, I will be able to go home. I am so excited!

Just yesterday I was feeling so discouraged and worrying about what would happen if there was no pop. I was trying my best to stop the negative thoughts and have a good attitude. All that anxiety, and one day later, the count doubles. All that worrying for nothing. This is a perfect example of why I cannot let this disease play mind games with me.

Now we wait to see what my WBC is tomorrow morning. Surely that is what I will be thinking about as I lie in the dark, waiting for the brigade.

Wednesday, May 11, 2011

Waiting for "The Pop"

My white blood cell (WBC) count this morning was 0.4k, which is around where it's been and not near the 1.0k I need it to be in order for WBC production to be considered to have begun.

Mother's Day was Day 30- the day by which we thought we'd see that magic pop. Today is Day 33.

The oncologist says I should not be worrying at all, and that I need to be patient. (I decided not to explain to him my Impatient status, though he might have picked up on it...). He said their last APL patient was also late with his Pop, and they went through the same frustration and tears with him. For some reason, it's comforting to know a guy in my position cried too.

The oncologist ordered another five days of the Neupogen, which is the white blood cell stimulator delivered through needle injection. That should help me, and he'll add more days if it hasn't worked by then.

Today, I am really trying to be positive. I'm trying to block out the fears. Instead of taking one day at a time, I've decided I'm going to take the next five days as one block. Five days for the Neupogen to work, five days to see the Pop before I let myself worry again. Need to breathe deep and think high WBC thoughts for five days instead of worrying each morning as I await the blood test results from the 4am draw.

Once the WBC count hits 1.0k, the second prerequisite to moving forward is that half of those cells are Neutrophils, which are the main white blood cells that combat infection. Right now I have too few total cells for the lab to count this subtype.

Nonetheless, it would be nice to have some of them. The word reminds me of something you'd find in the skincare aisle at Walgreens. If only it were that easy: "Honey, do you mind stopping on the way home and picking up some Mylanta, Diet Coke, and Neutrophils? I think there's a coupon for the Neutrophils in the glove box."

Monday, May 9, 2011

Patience and Inpatients

The definition of a patient is someone who receives medical care. An INpatient is someone who is kept at a medical facility for more that 24 hours. On my 33rd day in the hospital, I am upgrading my status to an IMpatient.

We had been hoping I would be going home today or tomorrow, with an acceptable white blood cell count. It's been at 0.2k / 0.3k for the weeks since the chemo reset my bone marrow's ability to produce blood cells. We need the white blood cell count to be at least 1,000 in order for me to be discharged (a healthy person's is 5,000 to 10,000). Today we saw a small bump to 0.4k. Unfortunately, not good enough, especially for an Impatient Inpatient.

This evening and tomorrow I will be receiving an injection of a drug called Neupogen, which is designed to boost white blood cell production. The oncologist said it might or might not be effective, but is standard procedure for patients whose WBC production hasn't returned by this time. I asked: if it doesn't work, when do we start to worry? He said we don't; he commonly has patients who don't see count improvements until 40+ days post beginning of chemo treatment. That's a relief to hear.

In the interest of preserving sanity, I am choosing to focus on that positive instead of the possibility of 10+ more days of hospital room service. Although I have the menu memorized, I still use it each time I order, so that I feel more sophisticated (and to verify the dish I pick doesn't have any of their nasty shriveled peas on it.).

I also asked the oncologist if there are any side effects of the WBC stimulator they are giving me today, like oh, say, losing your hair (never mind, got that one covered). He said the only common one is bone achy-ness. That I can handle. I've gotten very good at putting my cap in my hand and saying, "More narcotics please."

If my counts progress this week, I might be out of here by the end of the week. I am hopeful of that possibility, though staying a little guarded in case it doesn't happen. Once I am discharged, there will be a few weeks of recovery and then phase 2.

I know a lot of Inpatients for other diseaseas have much longer stays for which they must feel even more like an Impatient. I admire their courage. I shouldn't complain about my own stint. In that spirit, here is a much more positive take on Impatiens:

Sunday, May 8, 2011

Happy Mother's Day!!!

I hope all the mothers are having a wonderful day. They deserve an extra hug, kiss, and Godiva today.
Mom, love you and can't wait to see you.

Saturday, May 7, 2011

Derby Days

Today Animal Kingdom won the Kentucky Derby. I didn't watch the pre-show because Katelyn and Ryan were visiting, so I didn't get the scoop on the contenders. In the past, I've always placed a bet. I decided after the race that if I had bet, it would have been on Animal Kingdom. (Why not feel like I got it right?)

Tomorrow, Mother's Day, is Day 30 of my chemotherapy, which means the last day of this phase. My white blood cell count had a pop yesterday that had us all excited, only for it to be lower again today. I am hopeful we will have a nice jump in white blood cells on Mother's Day, as I can't leave until the white blood cell count is consistently higher. Concurrently, the doctors are transitioning me from the IV blood thinner to a pill form. This transition also needs to be successful before I can go home.

So there are some remaining roadblocks, yet I am getting antsy. I have not been out of the hospital in 30 days. I've begun a training regimen to get my mind and body ready to be back at home (where the doctor has warned me I will need a few weeks of physical adjustment.)

The details of my derby training days:

- Twenty-two laps around the nurses's station equals a mile. Today I pushed my IV pole 12 laps (and ignored the fact that a woman twice my age lapped me).

- I have also begun doing some arm weights with the cans of Boost the dietician gave me when trying to get me to eat despite the lesions in my mouth from the chemo. I am confident I will be able to increase the weight to Vitamin Water bottles within days.

- I've been sitting up for longer periods of time (always with my back to the bed because there's never a time when a nap wouldn't feel like a great escape).

- Finally, I've been working on my mental acuity: I've been playing Angry Birds on my new iPad. According to my scores, my mental acquity appears to be the aspect of my regimen that is most lacking.

Although Animal Kingdom may have taken the blanket of roses, my training days are not over. The doctors may be reducing my steroid dose, but I still have big hopes for when I return home, and for the Preakness and Belmont beyond.

If This was a Thank You Speech at the Oscars, I would get the Hook

Thank you so much to everyone who has been supportive of our family. It feels so good to know we are loved and receiving your prayers. The below is the view from my hospital bed. Without it, these days would be a lot tougher. I have loved hearing the updates from "The Real World." The emails have been just as cherished.

My guardian angel/memento/book collection sits next to the window with the view of the Manhattan skyline. As breathtaking as the skyline is, I prefer to look at my collection. The hustle and bustle of the city is not what I need right now. Your warm thoughts are what power me through. Aunt Lynn, Aunt Mary, and Uncle Bobby, your continued cards and packages have been sustaining. I love and miss you. And thank you Aunt Laura for working with the Cancer Society.

Thank you to my U of MN rowing team. I cannot believe it's been ten years. I have a lot of goals for when I get out of here, and having the strength to do a Power Ten on my erg is one of them. I'm sorry I missed seeing you at the reunion. Thank you Sarah for sending the package and channeling your positive coxswain karma..

Thank you to Jen, my mom, and Kelly for the clothes and hats. My style when I leave here will put the Royal Wedding and Kentucky Derby fashionistas to shame.

Mom (a.k.a. Mouse according to Katelyn), Dad, Matt, Jeff, Jen, and DiAnne: thank you for all the help with Katelyn and Ryan. Thank you to my family for sitting by my bedside, and for reminding me every day how much you love me and how this is just a blip in a wonderful life. I am sure at times you must have been really scared. Lucky for me, I was mostly too doped up during those times to appreciate the setbacks. But now that I do get them, I'm sorry I've caused you concern. We will get through this.

Thank you to Solar Capital for the food that has kept Ryan and Katelyn going ( I have to admit: I am a little suspicicous that Ryan has altered the orders to include more comfort junk food,or he is making side trips to the 7/11...). My bosses and team have been incredibly supportive. I will feel so enthusiastic about returning to work once I'm well enough. I miss all of the team, and the excitement of building our business.

And certainly not least: thank you to my neighborhood friends, both for the meals and the emotional support. At times, I have trouble getting through your heartfelt emails without crying, but I have desperately needed them nonetheless. Audra, your bravery to help me through this, given Sylvie's experience, can be nothing less than a gift from God.

As soon as I'm up for a relaxed backyard BBQ, it is happening. And I'm making you all wear hats!

I hear the Oscar music starting up, my cue to exit stage left.. Anne Hathaway is giving me a dirty look. I return the glare and mumble as I pass her, "Cancer patients can do whatever they dang well want." Then I do an interpretive dance of the Black Swan for good measure.

Wednesday, May 4, 2011

Katelyn 4-D

The last few days have been tough. Maybe because I've been at the nadir of feeling the weakest from the Idarubicin (stronger of the two chemotherapy drugs that wipes out all your blood cells and takes about 30 days to recover from the day of the first dose). Maybe it's because the situation is finally really hitting me. Maybe I miss Katelyn so much my heart feels like it's ripping in two (I've seen her for about an hour and a half total in the last month.). Maybe it's all three. I've been crying at everything. I cry when I drink a smoothie. I cry when I put on chapstick (No, I'm not exaggerating.) 

According to the oncologist, my white blood cell count should pop sometime around May 12th (a month post first dose of Idarubicin). I should be feeling a lot more energetic by then, and we should be moving forward on a plan to get me to out-patient status. There's just one caveat the oncologist was discussing with me this morning: I am still on the blood thinner IV to prevent the clotting complication that surfaced the other week. He said I won't be able to leave here until that risk is resolved. He plans to begin brainstorming solutions with the head oncologist this week. So that's my big unknown, in terms of beginning to move on.

At least my white blood cell count, and thus my immune system, should be returning in an anticipated number of days. That should make the Katelyn aspect easier because she will be able to visit more often, as well as making it easier for my parents to visit. Speaking of Katelyn, what better time to embarrass her than when I need something to smile about?

Ryan took the above picture after the Sesame Street 4-D show at Busch Gardens in March. The show was called 4-D because of the 3-D animation on screen, but also because the theatre has fake fireworks, bubbles, rumbling noises, etc.

Katelyn is obsessed with Elmo and Abby, and didn't take her glasses off the entire show. The picture is neither flattering of her, nor of me, but especially not of her. Her hair is greasy, she's got the over-sized fashion glasses, and the pacifier the size of her fist is a nice touch. And finally, she truly did make the show 4-D for me. She was so excited that she completely wet through her shorts and mine. I had to change both of our outfits once the show was over.

Despite our bathroom change, the entire day was fantastic. I have to keep reminding myself that what I'm going through now is a limited number of days. There will be more fantastic days ahead, and more 4-D shows. We will look back on this time as a bad dream. I just need to figure out a plan to emotionally get through each of these remaining days.  

P.S. Katelyn: this photo is going in your wedding slide show!

Monday, May 2, 2011

Why Us? (and how?)

The woman on the Purina Puppy Chow commercial doesn't have cancer. Neither do the actresses of the Real Housewives of Orange County. (Any guesses how I've been spending my time...?)

Yet I do. And I don't have any of the Leukemia risk factors. Though I do have to keep reminding myself I have the most curable type. Still, why me? There are 300 million people in the U.S. Thirty to forty thousand of those are diagnosed with Leukemia each year. Of those, 300 to 400 have my type. Forty years ago, my type was a death sentence.

So here I sit in the hospital bed, wondering how and why me. I know that God has a hand in it, maybe not in giving me the disease, but in giving me the strength to overcome it. In terms of how I came to this diagnosis, I will never forget how I got here.

Two o'clock Sunday morning, February 20th, I woke up with a left side pain that had worsened from the day before. I was concerned about Lily at 14 weeks pregnant, so went to the ER while Ryan stayed with Katelyn. Lily bounced around during that ultrasound, and I was told I had a kidney stone. Maybe that's all it was. They couldn't do a catscan to confirm because of Lily. That was the last time I saw her alive.

I was working on a tough project for work, so Sunday and Monday endured a lot of the "kidney pain" to keep up with the project and because I couldn't have pain meds while pregnant. By Wednesday, the pain was gone. Maybe it had simply been a kidney stone coupled with exhaustion from pregnancy.

Friday, March 18th, we left for a vacation to Florida. The pain in my left side had returned. Should we have delayed our departure so I could go to the doctor again, for what I thought was another kidney stone? Maybe, maybe not. Likely they still wouldn't have found anything. If they had, it might have opened a serious of medical decisions difficult for Ryan and I to have handled.

On March 30th, I went in for the routine five month baby body scan ultrasound. This is the moment I wish I could change. To go back to this scan, to see my lovely Lily flit around, and have nothing wrong with her or me. Instead, I lay on the table in panic as my ob/gyn and technician scrambled to determine why there was no heartbeat. How I wish I could take away those moments. Ryan was just as shocked.

Thursday we spent with specialists, trying to determine what had gone wrong. Another ultrasound found nothing. We couldn't tell if she was a boy or girl because of the placement of one foot, but we did get several other pictures of our sweetheart. She was ten inches long, and passed away holding her other foot to her mouth, as if sucking on her toes.

We also had an amniocentesis to determine if she'd had any genetic abnormalities. The one moment of levity that day was Ryan's blood test, in conjunction with the amniocentisis. It had been a stressful day, and he hadn't eaten in hours. They drew one vial of blood, and he almost passed out. They had to bring him crackers and juice, and he was sweating so bad, they had to put a wet cloth on his forehead and wipe the sweat from the arms of his chair. While I was still laughing, the technician brought a plastic bag containing 19 vials of blood to be drawn from me. (Since that day, I've probably had blood drawn at least 200 times, yet I still laugh at Ryan's failed attempt to be tough.)

A counselor also met with us to arrange the procedure to have Lily removed. We were told the safest place to have the procedure was a "a clinic" because they have the most experience. This blog is not the venue for passing judgment on pro-choice/life, but I will say it was the wrong place for my family to be for this heart-wrenching experience.

My parents arrived Friday morning to provide support, and we went for Part 1 of the procedure that afternoon. To enter the brick clinic, we had to receive clearance from bouncers. Check-in was on the second story, behind bullet-proof glass. Given my circumstances, the staff was kind enough to provide my family with a private consultation room. I had blood samples taken, which came back worrisome. The baby appeared to be poisoning my blood, decreasing my ability to clot. The doctor told me my blood counts would be rechecked the following morning, pre Part 2.

We arrived the following morning to a line of protestors, waving signs with graphic depictions of lost babies. Ryan dropped my dad and I off at the door, so we wouldn't have to walk along the line (Mom was at home with Katelyn.). A woman tried to hand me a pro-life brochure. I said to her, "I hardly need that. I have a stillborn." She apologized. Once inside, my dad asked why I hadn't just ignored her. I needed her compassion. I needed someone out there to know this wasn't what I wanted.

The lobby upstairs was bigger and more crowded than the DMV. Saturday is their busiest day. Those women were giving up what I wanted so badly. Again, the staff took us to a private consultation room, and a technician took my blood. My blood levels had worsened overnight.

That morning, for the first time, a doctor hinted there might be something more wrong with me than the baby affecting my blood. I was sent down stairs, where the procedure would happen, but warned I might be moved to the nearby ER because of my bleeding out risk. The room contained a row of lockers for street clothes, a row of recovery beds, and a row of women waiting their turns. By this point, I was sobbing- devastated I had lost my baby and terrified by the doctor's hint that there might be something more wrong with me.

I was given a pill to speed up the contractions that caused chills and nauseau. The procedure should have been done within the hour, but it didn't happen for another four. The doctor came to the prep room and said they'd decided to move me to the ER, so that they could have blood transfusions on hand in case I bled out. Still, the thinking was the baby was hurting me, thus the baby needed to be removed ASAP, despite the risk of the procedure.

It was several harrowing hours at the the ER before I was moved to the OR, during which I progressed to full-labor. I couldn't have an epidural because of the bleeding risk. Let me take a moment to say that Morphine is the most pointless, ineffective drug I have ever been given. By the time I was wheeled to the OR, I was begging to be put to sleep. I think my exact words were: "I CONSENNNNT!"

When I woke, I felt relief. My mom was by my side. They hadn't needed to give me a transfusion, and our healing process could begin. The doctor told me our baby had been a she. A little girl who should have become Katelyn's best friend.

I was kept at the hospital overnight for monitoring. Around 2am Sunday morning, I woke with the pain in my left side, and my face had begun to swell. No one had an explanation for the swelling face, but the medical staff told me to drink lots of water to flush the kidney stone. The hematologist retested my blood and cleared me to go home. We have not yet received this report, and are wondering if he missed something.

The swelling in the face worsened during the week, and the side pain didn't go away. By Thursday morning, April 6th, the pain in my side was so bad, I lay in bed, howling until it was late enough for us to drop off Katelyn at Early Bird day care and get me to the ER for pain management. Now that Lily was gone, they could finally do the catscan. And the history of the complications from the procedure over the weekend led the ER to do more detailed blood testing.

Shortly later, I was told there were abnormalities with my blood. I was moved from the ER to long-term care. Three hours later, a hematologist told me my symptoms indicated I had Leukemia and would need a bone marrow test to confirm. The aching in the ribs (the catscan had shown nothing wrong with the kidney) and face were the result of flat bones releasing the immature white blood cells into my blood stream.

Friday, April 7th, I was moved to this bigger hospital, with my new diagnosis, where I've been since. That week, the amnioscentisis came back clean. It had been my Leukemia that had hurt Lily.

My ob/gyn thinks the events that unfolded around Lily's passing saved my life. I wish that made the loss of her hurt less. I have seen Katelyn four times since April 6th. Ryan says that someday when she is old enough to understand, she will look up to me for what I have endured, and thank Lily for giving her a mom. Right now, her simply wanting to hug me like she used to would be enough.

On a bright note, the head catscan came back clean- no bleading. It remains unclear when I will be able to leave here. Normally the main driver is a recovered white blood cell count, but all my levels need to be back to normal, given the clotting in the liver and bleeding in the lung I have had. In addition to the ATRA chemo drug, I am still taking a steroid to reduce the bleeding in the lung and a blood thinner (Heparin) to prevent further clots, such as in the liver.

Once I am out of here, the next phase of the treatment will be daily IV injections of arsenic. This will mean an hour in the hospital a day, but at least I will be back at home, rebuilding my relationship with Katelyn. The staff here says I am beginning to look better. This is good, but I feel scared and confused. It feels safe in here, constantly being monitored, yet obviously I want to be back at the house, back to normal. I want this to have never happened to me. I want to be having a baby August 14th. I want to know "Why Us?"