Drugs, Drugs, Drugs

If I were an elite athlete, I would not be an elite athlete. It would be impossible for my multiple Dixie cup-filled helpings of pills each day to pass any drug test (In addition to the qualifier that elite athletes should be capable of more than walking down the hall gripping an IV pole in one hand and a family member's arm with the other.)

A particular hurdle to a clean drug test would be the steroids they've been giving me to help control the bleeding in my lungs. They are starting to taper me off of them, which is good news, but the withdrawal has side effects. These effects would have been good to understand before last night. I did not sleep at all last night and had a crushing headache. If I'd understood at the time the effect was from the steroids, I would have asked for stronger pain meds. Instead I was in a hormonal foul mood all morning. I've really been trying to be nice to everyone here (It's not their fault I'm going through this.), so I feel bad.

Luckily, late morning, a nice dose of Percocet improved my outlook. A surprise visit from my brother Jeff helped tremendously. Katelyn is sick, so neither she, my mom, or Ryan could visit today. So it was particularly good to have Jeff here.

No matter how hard I try to stay positive, it's not always easy. I am exhausted, and worn out from drug after drug. They just took me down to CT Scan to make sure my headache from this morning was not a result of internal bleeding. I'm trying not to worry about this, but it is just one more thing that makes me nervous.

The lead oncologist has said once I am discharged from here, I will need to be connected to my local hospital for at least five months for phase two of the treatment. Well let me tell you: once I am totally better and can travel, that will be one heck of a trip.

Again, thank you everyone for your words of encouragement. On a day like today, they've been especially important.

Say it with Pizza

A royal wedding happened today, the buildup to which lasted over a month. During that month, I had a great vantage point for watching the unveiling of the details. For instance, while waiting for the big kiss on the balcony, I brushed the last of my long blonde hair from my head (Who would have thought a kiss could make me cry so hard?).

One of the most interesting details I heard about from my hospital bed was the creation of a pizza with Kate's and William's portraits on it. Though I've never met them, I am sure they are a lovely couple. But if anyone deserves to have his profile on a pizza, it is my loving, supportive husband Ryan. He promised to love me in sickness, and he has done just that.

Just like Kate, his hair could be fashioned out of black olives. Though he would probably have to be made out of deep crust. A week ago, I watched him devour an entire two pound bag of jelly beans while listening to the head oncologist explain the complications that were sending me to the ICU. A pepperoni slice shirt would well symbolize the t-shirt he wore while sleeping next to me many nights on the pull-out chair. Glazed mushrooms for the eyes would represent all the hours he's spent combing medical resources and questioning my mom and doctors to understand my condition.

While I don't think my pizza could turn out as well as PaPa John's below, once I'm better, I am going to try my hardest to create an Ode to Ryan Pie to show him just how much his support has meant to me.

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!

Happy (Belated) Easter!!!

Katelyn and Lily (up in heaven) had great Easter egg hunts. I watched Katelyn's on Skype. The bunny hid the eggs so she could reach them on the back patio.  Even while wearing strappy shoes, Katelyn wouldn't venture onto the dewy grass to retrieve any farther away. Katelyn will be starting Bible school as soon as she is old enough.

My status since I last reported on being moved to the ICU has improved. The scare over the weekend centered around symptoms I was experiencing that are usually new to that first hypercritical week. Usually, if a patient hasn't had the liver clotting and lung bleeding in the first week, she won't get them.

These two symptoms have stabilized for me, so I am back up in oncology, being monitored for these symptoms from here. I am being giving a steroid and Heparin for the lungs/liver, as well as an oxygen feed since my lungs are less than 100% operational because of the blood in them. I am also being giving more platelets this evening because my last platelet count in my last tox screen showed a natural level below 50 (a normal human's range is around 300).

The biopsy on the skin rash has proven to be non-cancerous, which is a relief, and is most likely a vascular issue that will go away or a reaction to one of the pills in the Dixie-cup-filled dose I receive every day. The right eye vision also seems to be improving slightly. The 102/103 fevers have also subsided. Now my mouth and stomach sores seem to be my only new symptoms that make it harder to function in here.

This morning, one of the oncologists mentioned I am "turning the corner." They seem to use this expression with caution, because as I've learned, conditions can shift rapidly.

But at least it was the first positive news I've received since being here. I've been in hospitals for 19 days, not including the Lily days. Likely I will be here another three weeks. I am very thankful for the diagnosis I did receive. Other forms of Leukemia involve a four-month in-hospital treatment plan. I would go batty.

Room with a Different View

When I came to after the bronchoscopy, the doc informed me they were moving me from the oncology wing to the ICU.

They found blood in my lungs. Coupled with the clotting issue in the liver, these are hard to treat at the same time. Thus why they want me in the ICU in case an emergency procedure is required.

Docs think it's better to treat the blood in my lungs first (which has caused a lot of coughing). Today I received two platelete transfusions, a blood transfusion, and steroids to try to fix this.

Despite another rough day, I feel okay at the moment. Made it through another day, and I have so much to look forward to once I start feeling better.

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.

My 14-month-old Role Model

My niece, Elise, is as happy and carefree as a baby can be. She loves Elmo and climbing on anything she shouldn't. She also doesn't give a damn that at 14 months, she is still bald, and thus has to dress in pink and wear head bows, so strangers don't comment on "what a cute little boy he is."

My hair has not started falling out yet, but Elise is already my role model.  She is gorgeous just the way she is. I cannot hope to look as cute as she, but at least I can try to have as care-free an attitude about it.

Losing one's hair seems to be a big deal when one has cancer. Maybe I will care more later, but right now it seems inconsequential compared to everything else I've been going through. So Elise, I love you dearly, and look forward to headbow shopping with you.

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."

Sweet Katelyn

Every mother thinks her child is the sweetest, smartest, and prettiest. I like to joke that mine actually is. No parent can fault this pride because every parent understands what I mean. There is no greater love than for a child.

We are so lucky to have Katelyn.

 

One of the hardest aspects of this ordeal has been being away from her. It's been nine days. The last time I saw her was the morning of 4/7, the morning I went into the ER with what we thought was kidney pain. The patients on my floor have suppressed immune systems, so children under five years of age are not allowed. There is a family room down the hall, but thus far I have been on bedrest because of the bleeding risk if I fall.

Fortunately, my doctor has said I can visit with her for a short while in the family room tomorrow. I am so excited! We have been keeping her home from school this week to ensure she doesn't catch a bug that causes her to cancel on me last minute. After this visit, I don't know when I'll be able to see her next. My immune system will be getting weaker. Can't think about that now.

Eighteen months is an odd age for a child to have her routine so disrupted. She's been getting a lot of love from Mouse, PaPa, and Grandma, but she senses something is off. It has her unsettled. I don't want her to feel the heartache of missing her mom, yet selfishly, I worry that she will forget me. We are trying to Skype every night.

My other concern is about my hair. Katelyn's soothing habit is to twirl hair-- hers, Sheila's at daycare, Ryan's, and especially my long hair. I don't know how she will react when mine is gone.

On the bright side, my niece, Elise, and I are going to have an awesome photo shoot when this is over. She is 14 months old and still only has a little fuzz atop her head. (Jeff/Jen, please feel free to send me the visual aid, so I can show off how cute she is.). We will have matching headbows and outfits, which will need to be pink...

Second Dose

Today I will receive my second dose of the Idarubicin-- the heavy chemotherapy.

Yesterday a doctor inserted a PICC, which is a catheter starting in a vein in my shoulder and ending near my heart. Through it the nurses can administer all my drugs and take all my blood samples. Although the process wasn't my favorite experience, it will save me from being jabbed in the arms with needles multiple times each day.

The nurse will use the PICC today for the Idarubicin. The liquid in the syringe will be a flourescent orange, and she will wear an outfit resembling a purple hazmat suit while she's administering it. Naturally I will tease her about her fashion sense, which will be hypocritical considering I am wearing blue pajamas with a stethescope, gauze, and pill bottle print.

The side effects of the drug occur over time and are cumulative. Just this morning I am feeling Wednesday's dose. The doctor described it as sliding down a curve. A week or two from now, once I've received all the doses, I will feel the weakest. Then things will start to get sunnier.

Lily Elizabeth

The first time I felt Lily kick was around 16 weeks. The last time I felt Lily kick was the day before our 20+ week routine ultrasound, on March 30th. Learning during that appointment that she had no heart beat was a complete shock to Ryan and me. The days that followed were no better.

On April 2nd, the doctor told us that our 5 month old baby had been a girl, and we named her Lily Elizabeth. They would have only been 22 months apart. The Lily is a symbol of purity and beauty. Our Lily was perfect, according to our amniocentesis results. She lost her life because of the sudden onset of my Leukemia.

Lily's middle name is in honor of my mother, Mary Elizabeth, and my grandmother, Elizabeth. Right now, my grandma is taking care of Lily up in heaven. Grandma didn't get to meet Katelyn, but now she certainly has her hands full with Lily! Lily also has her older cousin, Timothy, to look out for her.

After we found out Lily had passed, family and friends comforted us by reminding us that "things happen for a reason." Even now that I know that reason-- the complications I had after her passing led the doctors to my diagnosis-- I still have a lot of "what ifs" that usually end with Lily being in the NICU of this same hospital.

In the middle of the night, I lie here in this hospital bed and grieve Lily's loss. I can't turn that grief off, but I do need to focus on what she gave our family. We would not have caught this disease so soon without her passing. Because we did, my sweet Katelyn will have a mother, Ryan a wife, and my parents a daughter.

Once I have recovered, we plan to do a private memorial. In the mean time, our spring garden will include Lily of the Valley.

The Plan

Over the past few days, we've heard from the oncologists about chromosomes, chromosome translocution, FISH (don't ask me to explain that one. This is where I fell asleep during the lecture), platelets, and a lot of other terms that still haven't give me the answer to "why?"

But I do understand the basic gist of what's wrong, and will understand it much better by the time I break outta here. My bone marrow is creating too many immature white blood cells.  These cells crowd out my ability to create healthy white and red blood cells, causing clotting problems and a risk for bleeding out. 

The treatment course is as follows:

- Last Thursday I received my first transfusions to help with the clotting condition. I also began the more benign of my two chemotherapy drugs-- ATRA, which is a high dose of Vitamin A that spurs the immature white blood cells in the blood to mature. It gave me crushing headaches at first, but now I am used to it.

- Today I begin the heavier chemotherapy drug-- Idarubicin, which wipes out the cells in the bone marrow that are pushing out the immature white blood cells. It also wipes out all the normal blood cells in the marrow, so I will become increasingly fatigued and my immune system will be more compromised. There will be four doses administered via IV over the next seven days.

- Then I will be monitored here over the following three to four weeks. Daily my blood is tested. Three times thus far I've had low fibrinogen (clotting component) levels so have needed cryoprecipitate infusions. They will keep watching this.

- Once I leave here, I will need to return daily for outpatient arsenic treatments for three months.

- And finally, I will be taking the Vitamin A for two years.

I was supposed to start the Idarubicin last night, but after the nurses tried over the course of three hours to find a vein in my arms that hadn't already been punctured from prior IVs and blood tests, they gave up. They were hoping to put a central line in me this morning, but that was nixed as being too dangerous for a Leukemia patient this early in treatment (because of bleeding out risk). Luckily, they were able to get an IV in me this morning, and now we're just waiting for the pharmacy to deliver the Idarubicin and anti-nausea medicine.

It just arrived. Let's get this party started!

Life is a Beach

Throughout the past two weeks, life has felt a lot more like a b*tch than a beach. But I believe God has a master plan, and there's got to be a lot of white sandy beaches in that plan, right? My goal is to be walking along one of those beaches by August (no, the Jersey Shore does not count).

Today we received good news. The results of my bone marrow test came back, and they confirmed the original diagnosis. The type of Leukemia I have is currently the most curable of the varieties. It has an 80-85% remission rate.

Now that they know the exact type, they will be starting the heavy chemotherapy drug tonight. I am nervous about this, but maybe it will be a walk on the beach. Tomorrow I will give the names of the drugs and timeline for the treatment, once I get better at typing on this new iPad (and get the spellings of the drugs).

At some point I will add entries about what has transpired over the past two weeks, but first I wanted to focus on how we're moving forward. Thank you to everyone who has expressed sympathy for the loss of Lily, concern for my health, and a desire to help our family. I apologize I haven't been very responsive. I will get there.