Sunday, March 24, 2013

I got good news on Friday!

This is a photo of my port. It is a square box right underneath my skin with four screws. There are two holes in the middle where my nurses can poke me with needles and draw blood and give me medicines instead of going through my veins. From the port, you can see underneath my skin running from the port up to my jugular vein a cord.

As part of my maintenance therapy for at least one year, I go to clinic at the Huntsman Cancer Hospital (HCI) at the University of Utah every week, usually on Fridays. HCI, along with University of Arkansas, is one of the top Multiple Myeloma clinics in the world and the most aggressive. Because I was young at diagnosis and in excellent health, they're pulling out all the stops with me. That means I've undergone six rounds of intensive chemotherapy and two stem cell transplants. I also had a pick line in my neck for a week and a port in my chest that is still there. I've had one hospital stay for four days and five bone marrow biopsies. I'm not even sure how many blood transfusions and platelet transfusions I've had.

So every Friday I show up at clinic and my angels (nurses) give me my weekly dose of Velcade (a chemo drug). Every other Friday I get partial labs drawn, and once per month a full CBC. Once every three months I get Aridia to strengthen my bones and that adds three hours onto that visit.

This past Friday was my full CBC day and my nurse told me that my labs looked the best they've maybe ever looked. Even for a normal person without MM, my creatine and platelets were amazing. I did a happy dance. Every time I get great news, I just celebrate that. I try not to look too far ahead because then it's nothing but darkness and fear. So I was thrilled and so was my mom.

So what did I do? I celebrated by eating, like, 3,000 cookies over the weekend. Ugh. Not good. I try to stay away from sugar because it's really super bad for cancer. But I sometimes fail miserably.

A shout-out to my mom

I have to mention my mom. She is the most amazing, kind, loyal, energetic, hardest working woman I have ever met and that is no lie. She told me even before I was diagnosed (but after my doctor called me in Utah to tell me I needed to have major testing done when I came back) that I would never be alone in whatever it was I needed to fight. She was right. She never lets me go to doctors visits alone. She is always right there beside me. And some of those visits are long and tedious. I may not have a husband who is there for me, but I've got my mom!

Side effects (the bad ones)

So this is what being sick does to you (or at least me, anyway). It teaches you to live in the moment. I no longer fear death at all. I don't want to go, though. I pray many times per day that I will be around long enough to raise my children and I am planning on staying strong and fighting HARD.

The Aridia that I take once every three months attacks my jawbone. Sometimes when I eat, one side of my face will swell up. I massage it out. It also sometimes makes my jaw lock up. And it gives me headaches and jaw aches. I use Doterra essential oils to help with inflammation, usually frankensense and Wintergreen, sometimes lavender.

Every evening I take thalidomide. I wait until I'm ready for bed because it makes me feel fuzzy and tired and it makes my feet tingle.

Once per week, on the same day I get my Velcade injection, I take 20 mg of dexamethasone. That gives me the jitters, makes me very edgy and temperamental. I also have a really hard time sleeping for two days so I have to take Ambien for those nights or I won't sleep at all. I use lavender and Breathe essential oils to help calm and center me. Yoga breathing also helps. (Side note: When first diagnosed, Kaiser put me on 40 mg of Dex per day. It made me feel horrid! When my doctor at HCI found out how much I was taking, he was shocked and gave me a break for a week. Then we dropped my dosage back. It helped.)

For a year, I've had to give myself an injection in my stomach every night to prevent blood clots. The side effect here is that I have a black and blue stomach- and it hurts. Finally I get to take a pill instead. I'm thrilled that I'm done with self injections!

Fatigue! Sometimes by the evening, I'm so tired that it's indescribable. Here's an example: I'll be in bed and look at the remote control that is next to me but I don't have the energy to reach out and grab it.

Bone pain! My bones, especially my rib cage area, can be prone to soreness and tightness. Usually I don't need pain medications but sometimes I do. When I first moved to Utah, I went to sit on the toilet and one of my ribs popped. Bob broke one of my ribs in December and it took months to heal. There were nights that I slept on the couch because it was less painful to get off and on the couch than to get in and out of bed. Ouch.

Two days post Velcade injection, I'm just tired and fuzzy feeling all day.

If you've ever heard of the term "chemo brain", it's real! There are times I can't remember names or events. Sometimes I struggle with counting out the right change when I'm purchasing something. I remember one morning trying to get dressed and literally sitting on my bed to concentrate on how I was supposed to do that. "Think, Lizzy, think. Find jeans. Put jeans on. Now bra. Bra is in the drawer. Now top that matches"...

Before diagnosis, I had 20-20 vision. Now I can't see a thing without glasses.

Before treatment, I had long thick hair. Now I wear really good wigs. I actually like my wigs better than I liked my real hair. But wigs are annoying sometimes and by the end of the day, I can't wait to take it off forever. That said, my hair is coming back and fast. By the time summer gets here, I'm going with whatever real hair I've got.

Thanks to this disease, I had to leave my beloved San Diego. I loved living there and Utah is not a place I'd ever have picked to move. Not in a million years.

I also had to quit working, something I never thought I'd do. I was proud of my career and the income I commanded. I now find absolutely no happiness from my job. Oh, wait, this is a positive thing!

I've become dependent in ways I never wanted to be. I rely on my parents to help me raise the kids, take me to doctor appointments, pick up medications, sometimes talk me off a cliff when I have a panic attack... It's been incredibly humbling to realize I can't just do it alone. Thank goodness I have them.

Side effects (the good ones)

I left an abusive husband.

I get to have the time to spend with my kids. I actually know them now.

I get to spend precious time with my parents.

I focus a lot of time and energy on my physical health (as if I have a choice).

I'm closer to God than ever. I pray all the time.

I'm developing a very close mind-body connection. Bikram yoga helps. Power walks help. I talk to my body a lot. I praise it for fighting hard against myeloma cells.

I cheer every birthday I have, every good health day I have, every wrinkle that I see. I am so grateful for Every.Single.Day. I no longer fear getting old, I embrace it.

For once, it's sometimes all about me. Ok, mostly when the kids are in school. But for the entire five years I was with Bob, it was all about everyone else. For once, it's sometimes just all about me. I never should have lost myself like I did.

Good news is good news!

So as I reflect on Friday's news, I'll just let it lie right there. Good news is good news. I'll take it and celebrate just that. Hopefully next time it'll be without the sugar overload.