Before heading to my appointment, I stopped by the lab at the Kaiser in San Mateo. I had to have another INR done today to check my Coumadin level. I later found out that I was at 1.6 (ideally we want to be between 2-3) which meant that my blood was too thick. A pharmacist with the Coumadin Clinic called me later on and instructed me on how to take my pills. 2 mg tonight. 1 mg tomorrow and Friday. 2 mg on Saturday and 1 mg on Sunday. I have to retest on Monday. I had to write it all down. Every day it's a different dosage of Coumadin. I'm constantly getting my blood checked. This is my life. How long will it be like this? Do I just have to get used to getting my blood drawn 1-3 times per week to check my Coumadin level? I wish that I knew someone else who was on Coumadin so I could ask them about their experience. I know I have to be on them for the rest of my life. Later I went on eBay and ordered a medical alert bracelet that has "Taking Coumadin" engraved on it. I figure that if anything happens to me and I can't communicate this, the bracelet will come in handy.
With my Starbucks in hand, I arrived at Kaiser in South San Francisco at 10:15am. I let valet take my car and went in to the Orchid Center to register for my appointment. I got my computerized wristband and waited for my nurse to call me in. Today I had Dawn as my nurse. I have seen her around but had never had her before. She set me up in infusion chair #1 and asked me where I wanted the IV. I decided to go with my right hand because my left had bruising from chemo a week ago. She stuck the IV in and it stung. I will never get used to needle pokes. They make me cringe and I can never watch the needle go in, but after a couple of seconds I'm over it. I asked Dawn about my ascites (fluid build up in the belly caused by the tumors "weeping"). I told her that yesterday I took my usual dose of 20 mg of Lasix (my diuretic) and that I thought my scale was broken because it told me that I had lost 5 lbs. I assumed it was all fluid because I had noticed that I was peeing every 20 minutes. She said it was normal and shared a story with me about how when she first started nursing, she bought a pair of size 5 jeans and took a Lasix pill to fit into them. She lost the water weight but was so weak from it she couldn't function.
Waiting for my Aredia infusion after nurse Dawn hooked me up to my IV.
I waited in the chair with my personal tv by my side for the meds to come in. I didn't bother turning the tv on, my iPhone is much more entertaining. The Aredia arrives and Dawn hooks me up, letting it infuse for an hour. I sit there texting and checking Facebook. Suddenly I hear a newbie arrive in the chair next to me. Curtains separate us but I can hear everything she is saying. She tells her nurse that she has questions about the anti-nausea medication. She talks about how her doctor prescribed Zofran and Compazine but she was anti-drug and wasn't sure why she needed more than one med. Zofran and Compazine are my good friends. Newbie says that she is "anti-drug" and doesn't want to just take all these pills. I so wanted to pipe in and guide her. Her nurse was doing a great job at answering her questions but I find that talking with fellow warriors about their experiences also is a great source of knowledge and we go through it first hand. She complains about the side effects from taking all these drugs, which in my experience have been non existent or manageable. Oxycodone, for example, will constipate the hell out of you (like any good opiate will) but as long as you take a stool softener and Miralax, you're all good. The problem she had was that she took Decadron right before she went to bed and couldn't fall asleep until 1am. Decadron is an anti-imflammatory drug we take the day before chemo, of chemo, and after chemo. My doctor (and also pharmacist) told me not to take it after 4pm as it can cause difficulty sleeping. I guess she wasn't told this. See, drugs aren't so bad. You just have to educate yourself about them. Google the hell out of them, I say! I really wanted to introduce myself on the way out and ofter her my number in case she wanted to connect but I was too shy to.
My hour infusion was finished before I knew it and head nurse Cynthia set me up for another Aredia. I go back in on May 30th. After my appointment, I stopped by the medical assistant's office and picked up the hard copy of my "Do Not Resuscitate" form. My doctor had to sign off on it. They reminded me to keep it out in a visible place. It felt weird holding that form. Knowing that those were the instructions on how far I wanted someone to save my life. I left Kaiser and went to run some errands before heading home. I spent the rest of the afternoon watching tv with my cats.
I went online to the Alaska Airlines website and poked around at flights to go home. Well not home home but home as in where the majority of my siblings live, Seattle. I had saved up 74K miles and it would only cost me 25k and $7.50 to fly home. I was ecstatic! I checked the calendar in my iPhone to see what dates I had available. I meet with my oncologist on the 14th, have chemo on the 15th and Aredia on the 30th. I'm usually knocked out for a good week after chemo infusion so I figured the 22nd would be a good time for me to go and the 29th to return. I'll be taking my Xeloda (chemotherapy) pills during that time but I haven't had any side effects from them so I'm pretty comfortable traveling on them. My doctor said I was ok to travel as long as I take my list of medications and the notes from our last visit just in case I have to visit an ER and need to get that doctor up to speed on my case. Even if something pops up or goes wrong between now and May 22nd, I will only lose $7.50. The only thing that I am concerned about is my Coumadin level while out in Seattle. I plan on calling the Coumadin Clinic to let them know about my trip and asking them for their advice on dosing during that time. I know that Kaiser is affiliated with Group Health in Seattle so I'm covered there in case I need to see a doctor or go to the lab. I'll figure it out.
It's 1am now and I'm anxious for what the morning brings. Aredia always causes me excruciating bone pain the following day. In the past I was told to take Tylenol for the pain but it does not work for me! My doctor suggested I take oxycodone and I have the bottle sitting right next to me. Last time I woke up at 7am with the feeling that an elephant had sat on me and I just cried while waiting for the Tylenol to kick in. This time I'm ready for it. Bring on the bone pain! 2 oxycodone and I'll be knocked out!
