Archive for the ‘Pharmacopeia’ Category

Turn It Down- on steroids, refocusing on support

Tuesday, August 18th, 2009

I’ve been getting overwhelmed, thinking about writing in my blog, and so I haven’t done much of it as you can see. That’s a feeling I’ve been experiencing a lot of lately- a sense of overwhelming- and it turns out it’s mostly drug-induced, artificial.

I’m still not used to the effects of the steroid I’m taking, Dexamethasone. In fact, I had no idea what I was getting into when it was first prescribed to me last month. No one explained its side effects, and I didn’t think to ask. Up to this point I’ve just been letting whatever drug details get through that seemed relevant and leaving it at that. (“You’re giving me OxyContin for pain? I could have severe constipation? Ok…. Lopressor to keep my blood pressure down? I might get tired and dizzy? Whatever…”)

The drug’s potency is about 20-30 times that of hydrocortisone and 4-5 times of prednisone. I take a 4 mg tablet, four times daily. As one of my radiation doctors described it this last week when I began complaining of symptoms, the shock to my system is like drinking 50 cups of coffee.

It was returning from my LA trip last week, when my doctor upped my dosage back to 4x daily, that I really began to notice extreme changes that were very UNme. Most symptoms I had been experiencing since the start of my prescription a month ago, but it’s the emotional/mental effects that have been hitting me hardest lately. Now, I wish a doctor or nurse had warned me about this scenario of side effects:

You’re going to become something of an assh*le. Your wife is going to get the brunt of this as you become more and more critical, mean-spirited. You’ll make her cry, and you won’t be able to see how your dark mood is muddling everything up.
Sleep? Forget about it. Not only will you lose it at night, you’ll convince yourself you never needed it, all the while dozing throughout the day in a mostly unfulfilling way. Any productivity gained by having all those extra hours is lost in a low-grade drug haze.
You just can’t get enough to eat. Every meal is an overkill of double portions, and snacking takes on a whole new meaning. Your face puffs up and your gut juts out.
You’ll have a general feeling of discomfort and upset. From stomach and throat irritation to cracking, unhealing wounds to annoying periods of increased sweating.

So, with all this trouble the drug is causing me, why on earth am I taking it? According to Wikipedia’s Dexamethsone page:

“In oncology, it is given to cancer patients undergoing chemotherapy, to counteract certain side-effects of their antitumor treatment… Dexamethasone is also given in cord compression where a tumor is compressing the spinal cord.”

In my case, it’s mostly for spinal cord compression. I spoke with Dr. Kukunoor on the phone today and he told me I can again cut back to 3x daily, and that next week- after I start back on chemotherapy again- I may be able to decrease to just 2x daily. I can’t tell you how relieved I’ll be- body and mind. Let’s hope the radiation is doing all it can to shrink the tumor that’s making this necessary in the first place- the one between my shoulder blades.

My last radiation treatment will be Friday. Then, back to the hospital on Monday for both chemotherapy and kidney surgery. My brother and his son will be in town beginning Thursday. I’m excited to be able to see them both, Mark and Jack. I can’t tell you enough how much my family’s support and presence has meant to me; my wife, parents, siblings, aunts and cousins. I’ve always known how important they are to me. I guess I never really knew, until now, how powerful their influence is- to facilitate healing and catharsis.

My friends have also been essential to me, of course. They inspire me, provide emotional support, and motivate me for what lies ahead. I’ve been amazed at their level of devotion, and it makes me want to give all I can in return; to show their belief in me is not wasted.

So, what gets me through these rough times– when the drugs play tricks with my mind and the myriad physical symptoms keep wearing me down? My family and friends, of course. My commitment to them, and- as a result- my commitment to heal and choose to live as best I can.

And I’m so grateful for Kasha. I can’t imagine making it through without her. We chose each other, for better or worse, and we’re able to love each other through whichever comes our way. Let that realization shine through each time Buster or any steroid tries to bite us in the ass.

Here Comes The Sun

Sunday, June 28th, 2009

…the smiles are returning to their faces!  (Abbey Road, Beatles)

I love that song.  It’s such a happy soundtrack to put with today.

It’s Morgan’s 10th day in the hospital and he is BACK!  : )  I walked in about 1:45 p.m. today and Morgan had just finished his shower and was up and around so we took a quick lap around his floor.  The nurses at the station were all so pleased to see him up, out of his room and walking.  We got a lot of smiles and attention.  We made it back to the room and Morgan’s dose of pain medicine kicked in and he started to get drowsy and a little loopy.

Morgan, Kasha, Ruth (Kasha’s mom) and I had some interesting and fun conversations.   We talked about Care Bears, locust, birthdays, people on the roof, loud neighbors and more I can not recall at the moment.

On a serious note, there has been progress.  Here are some of the victories:

  1. No pain
  2. No nausea
  3. Never got sick
  4. Morgan’s creatinine levels are normal and he was released by the kidney specialist today.
  5. Dr. L was by and said he will be making plans for him to go home as soon as the urologist releases him.
  6. Morgan is making wise food choices at mealtimes.
  7. He has an appetite and is eating well.
  8. No #2 issues
  9. Morgan’s bright, blue eyes are back and his coloring is good.
  10. He was clean, looked and smelled great and was in good spirits.

Tomorrow is another new day!  The urologist is expected and he will give news to whether the catheter comes out or stays (if there is any doubt and a chance of putting it back in, Morgan votes to just leave it there).  Once that is decided the plan is to send him home.

Bring it on…  Monday morning never looked so good…