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.