Cycle 1 Day 8

Today my appt was at 10:45, so my neighbor drove me to the hospital. Bloodwork was taken, and I turned up anemic. Enough that they decided to drop my Gemzar dosage. We also decided to get two units of blood which would be faster at keeping my anemia at bay. The Arinesp shot takes awhile to kick in, and there is now talk that it may interfere with the Gemzar.

So, I spent the afternoon hooked up. Napped a bit. My blood pressure went up and down all day, not sure why. After I started taking the high-blood medication, I had an immediate drop to those numbers I've had all my lilfe. We're not sure what the cause is.

I'm having some restless leg syndrome tonight, so took an Ambien and waiting for that to kick in. Hopefully I'll have a short day at the hospital on Monday. My sister wants to spend the afternoon with me. That wil be really nice, considering her schedule this time of year.

Saturday afternoon: Whatever it is I took kicked in big time. I could hardly walk. My balance was off the charts. I fell at some point face first into the carpet and have a nice scrape and bruise at the top of my nose. Went back to bed after a bit and slept in spurts. Took a nap this afternoon. Not sure what that was all about. Always carefully check your medication bottles especially when there are more of them than you have fingers on one hand.

I'm not really feeling the perk I expected from the blood transfusion. I do have a bit of a headache. I think we may need to get a sphygmomenometer (blood pressure kit) to keep a closer eye. The blood pressure issue really bothers me. I've had low-end BP my whole life. After I finished the chemo in November, it suddenly went up--way up. No one could explain why it jumped. As soon as I started the meds, it came down pretty nicely. But it seems to jump around a bit. So, we may keep a closer eye on that.

Ah, the joys of chemo again. Can't live with it, can't live without it. One thing I have learned is that if you're going to have chemo, get the power port. It just makes things easier. Don't wait for 3 months like I did to see if the chemo is working or not. That port just saves all kinds of trouble. Your veins will thank you.

Cycle 1 Day 4

I had my second infusion of the study drug yesterday. It went well, and I am feeling OK. Michael had meetings, so he dropped me off and a friend in the neighborhood came and picked me up. She volunteered to do that again on Friday. Thanks LY.

I go back on Friday for an infusion of both drugs again. That seems to add about an hour to the day. Not too bad. I managed to nap through most of yesterday's infusion.

Saturday some friends gave us tickets to the draft horse competitions in the afternoon that they weren't able to attend. It was cool. Those horses are all so HUGE and they work really hard. They had a horse weight pull at the end. I've done dog weight pull at the National Western, so it was neat to see the differences. Those horses loved the pulling and really put their hearts and souls into it.

It was really fun to get to attend the stock show events this year. Thank you B&AM. Something to check off the bucket list. We also have our plans made to go whale watching in San Diego in mid-February. Can't wait to see our friends and have some fun.

Now, if it would just warm up a bit...

Cycle 1 Day 1 (C1D1) and Other Things

We were at the hospital at 7:30 this morning. Stayed for about 6 hours. Since it was my first treatment there, things took a little longer. I had two anti-nausea drugs, then the half-hour Gemzar, and then the two-hour Onconova. Slept through most of that. Then we grabbed a bite to eat and came home. I feel pretty good. Just going to take it easy the rest of the day.

Went to the National Western Stock Show and saw Dancing Horses last night. It was something I've always wanted to see. It was really cool. I admire people who are so comfortable on a horse that they look so effortless when they ride.

We also went to a funeral home and made arrangements for me. Now that that's done, I don't expect I'll be needing it for awhile. Having it in place takes the pressure off, so now I can put that off for a long while. That's my story and I'm sticking to it. I have a good friend who is a funeral director, so it was comfortable to have her sit in the meeting. Knowing her gave me the confidence to just do it. It is a relief to me and to Michael. It also gave the four of us an opportunity to bring out our sick sense of humor. It helped.

So, the next battle begins. We are still making plans for the future including whale watching in mid-February and the shuttle launch in mid-May.

I'm In The Study

I just found out this morning that I am, indeed, approved for the second study we tried for. I will be taking a new drug, Onconova, to see how it does with the drug Gemcitibine (Gemzar) which I took in my first chemo attempt. It is hoped that this drug helps the Gemzar retain its efficacy longer, without beating up the person so badly at the same time.

I'll be going to University Hospital about twice a week. The Onconova infusion will take about 2 hours. The Gemzar will again take about 30 minutes. I will get both drugs together every other treatment. Each round is 28 days. After the second round I will get another CT scan to see how things are progressing (or not progressing).

It's been good in some ways to be off chemo for awhile, but I know things are progressing slowly and I'm anxious to try to get the process to slow down and/or stop. The side effects could be similar to what I experienced last year. So, I kind of know what to expect, but yet it is still a bit daunting to think of going through it again.

I am certainly not ready to give up. I am so grateful that I am still here almost 1 year later. I'm ready to be done with cancer and move on with my life. I hope that this will be my miracle. I've done my best to handle this as well as I can. Maybe I've proved I can handle whatever comes my way. Maybe it's time to move onto the next lesson. Maybe I can take this episode of my life and turn it into some way of helping other people.

Anyway, we march on. Thank you for continuing on this journey with me.

Redemption (I Hope)

The nice thing about the blog is that I can let it all out, disperse the emotion, and then move on. That way I don't have to physically scream and scare the crap out of the neighbors.

The doctor called about half an hour ago when he got back to town. He always seems surprised that anyone would be sleeping at 8 or 9 in the morning. Huh! I talked to him about everything. I told him that I wasn't going to be in limbo for another two months and that I was worried about disease progression. He tried to get my CT scan up to look at it, but his computer had wigged out after a software upgrade. He said there were several phase 1 studies available and one study that looked particularly good for me, but he needed to verify the time frame and available slot. Since we've done all the testing, he said I should be able to get into one within the week.

Hopefully I will hear from him by Monday. I told him I'm available to come down and sign papers and get started at any time.

The last couple of days have been rough. A wise friend in Montana who is going through a similar journey to mine, makes sure that I can see the bigger picture and that I don't get stuck in a rut. He has been a good reality check. You know who you are. It's really amazing that people you never thought you'd be in touch with again, find you at the time that you need them most.

Ain't life grand?

I Don't Qualify

After weeks in limbo, I finally got the news that I don't qualify for that perfect phase 2 study the doctor presented to me. After several sessions of fluids/blood draws and a 24-hr urine sample, my creatinine levels have been consistently up, meaning my kidney function is down.

I am so disappointed, upset, and angry. I'm angry because we've been strung along since before our vacation. The doctor is at a conference, he only comes into the hospital once a week, there are holidays. Just business as usual. It's not business as usual for those of us who have the cancer. Every moment not under treatment is time for the monster to grow and invade our bodies further. Since Thanksgiving time frame, I've gone from having minimal abdominal discomfort to using pain medication. That tells me something is going on in there. People with cancer don't have time for holidays, conferences, or just time to wait.

If we could have moved this along from the beginning, I'd have had all my tests and been approved much earlier, as the kidney issue didn't show up in blood work until right before Christmas.

So, now we are in waiting mode again for the doctor to call us from wherever he is out of town right now. Our best shot at really doing something proactive is gone. The baseline numbers must be at certain margins otherwise I might get hurt. What's the worst that could happen? DUH!

I'm not angry at any one specific person. I'm angry at the system for its bureaucracy that costs us precious time. I'm angry at the cancer for coming into my life and screwing things up. I'm angry that I'll be denied a treatment that could possibly be my miracle. I'm sick and tired of being sick and tired.

I need to move forward in a productive direction. I can't afford to wait anymore. Don't forget that those of us who are waiting are the ones with the least amount of time.

Our new bed came yesterday. It's WAY more comfortable than the old one. It will be good to at least be able to sleep comfortably.