Cancer World

I just read an article my mother sent me called 'Chemo World' written by an oncology nurse. It was very well written and showed the author's insight into this world.

I've been thinking about the 'Cancer World' I now live in. It's almost like a parallel universe. Everyone in this world understands medical terms most nonmedical people do not. Seeing 10 people hooked up to IVs in the treatment room is old hat. You start to recognize people, and I've even run into a dog-world acquaintance I've known for years who is in treatment. It was odd to see him outside our normal venue of dogs.

We've gotten to know several of the treatment nurses on a more personal basis, as they've gotten to know us. They were excited to hear we were getting married. They loved the pictures. We've developed relationships with the doctor, physician's assistant, and nurse practitioner along with the medical assistants, lab techs, and schedulers. The radiation tech gives me a hug when I go in for my scans since I helped them get their current accreditation.

Everyone has made an effort to know our names and ask how we are doing. The times when there have been tears, they have all been very solicitous and comforting.

I asked myself at the beginning why people would go into this field. How can the doctors give bad news to people day after day? They know that many of their patients have a finite amount of time left. I suppose they get an equal amount of giving good news as well. "You're in remission", must be heaven to those who get to hear that. It must be satisfying to the medical team to know that they played a part in helping someone get well. I suppose they must also get sad about the people they tried to help, but lost the fight.

I know that the people in cancer world are mostly compassionate, caring, and interesting people. Those who enter the world voluntarily as caregivers are angels sent here to help those of us who enter kicking and screaming and in shock.

It's not a world I ever considered I would enter. As one of the people who has an uncertain outcome, I am in this world not by choice. I have seen the good in people on both sides of the world. I have seen people do what they need to do because they are not ready to go. It's not an experience I asked for, but I appreciate it for what it has shown me.

Dr. Consults, Pool, and Astronauts

OK, these topics are not alike, but they are what I intend to discuss here.

We saw an oncologist at the RMCC in Aurora, who is affiliated with University Hospital. We discussed my going into a trial. He said he also thought that now would be the time to do this before I try the Zeloda.

He has two phase 1 studies, one of which has two FDA-approved drugs where they want to study people taking both.

He is looking into whether there are any phase 2 pancreatic cancer studies. A study lasts about 8 weeks. It can be very time intensive. There may have to be daily visits at times, and some visits can last many hours. I would probably need to arrange transportation help, as Michael won't be able to take that much time off.

The Dr. said that you never know if you might get something that works really well. It's a crap shoot. We were a little worried about being off drugs if I got something that didn't work, but he said that in my current state of health, I shouldn't lose too much ground if I need to go to the Zeloda.

On 12/4, we have an appt with a renown pancreatic cancer specialist from Johns Hopkins. I need to review the two studies he gave me. We will find out more specifics about the studies and whether I am a candidate. After that, we go to Mexico for a week. WOOHOO!

I have played pool the last couple of weeks. Last week I won my 8-ball and 9-ball matches and also won a makeup 8-ball match. This week I also won my 8- and 9-ball matches. Up until last week, I have consistently lost. I think the more regular playing definitely helps.

Last Friday, since I didn't get a treatment on Thursday, I was able to attend a program at Ball with the shuttle crew who will be doing the Hubble repair next spring. I introduced myself to each of them and shook their hands. I also got the mission patch, instrument pins, and signed photo. It was really exciting to hear them describe their jobs on the mission. I don't know if I'll get to the launch or not, but it was very cool to meet the crew.

Tomorrow is the Turkey Trot. My family, many non-Ball friends, and many coworkers will be running/walking to benefit me and another employee with serious cancer. I'm looking forward to seeing everyone.

The Top 10 Reasons I Hate Cancer

10. It's physically uncomfortable.
9. All the poking and prodding.
8. Having a port sticking out of your chest.
7. Losing your hair.
6. Chemo brain.
5. Food tasting like crap.
4. Being beat up by chemo.
3. Weakening of your body.
2. Emotional roller coaster.
1. It fucks up your life.

Scan Results

The Dr. came in and got right down to business. It was obvious he wasn't going to give us good news. Monday's CA19-9 numbers have gone up about 300 points. The scan shows two new tumors on the liver, the biggest tumor has gotten bigger, and the nodules in the lung have also gotten bigger. There are a few other minor changes, but it all adds up to the fact that my crafty cancer can currently cream the chemo. (OK, it was a bad try at alliteration.)

The pancan is becoming resistant to the chemo regimen I've been on. It is also kicking my body's butt. So, rather than put me through another round of killer chemo, we are stopping the drugs I'm currently taking. We will meet with another RMCC oncologist in Aurora to see if I might qualify for a phase I study. Statistically, phase I studies are generally unsuccessful in treating a disease because they are trying different dosages, etc. But, since I am still in good health overall, the Dr. suggested I look into this before beating myself down with another drug right away.

If not, I will start a medication called Zelota. Anecdotally, people who have done well on Gemzar/Tarceva typically do well on this drug for awhile. It comes with its own set of side effects, of course. The other option is to do nothing, which would give me 3 to 4 months. I am not ready to quit. This does, however, give me incentive to get serious about getting my life organized. I will work harder at that.

The good news is that, since I didn't get treated today, tomorrow I will feel well enough to go to Ball for an employee event with the astronauts who will be doing the next Hubble servicing mission (which now is moved to April/May). I may not get to go to the launch, but maybe I'll get to meet the astronauts. That would be really cool.

Transfusion

I saw the Dr. late this morning. My platelets were VERY low and I was very anemic. I had all the symptoms he mentioned. We went next door to the hospital where I got a bag of platelets and two pints of blood. I was in the hospital from 2 pm until 8:30 tonight. I'm already feeling a little bit better. The good news was my white cell count was really good, so either I'm not fighting anything off, or the antibiotics have already kicked in. I will finish out the week with them. My blood was a little thin, so my blood-thinner dosage is a bit less for a few days.

Next Monday I will have my scan and have bloodwork/see the Dr. to follow up today's events.

Two of my sisters came by to visit me in the hospital which was nice. Michael was there of course. He wanted to know where they do the transfissions. (If you know Michael, you'll understand the question.)

I really hope that now I'll be able to enjoy the 9 days until my next treatment. The treatments are definitely taking a toll. Hopefully we can avoid this kind of thing so we can enjoy our week in Cozumel in about a month.

Not a Great Week

It's been a tough week. I've had fevers, chills, and weakness. Friday I started on a broad-spectrum antibiotic. The fevers and chills are a bit better, but I still can hardly walk up the stairs from the basement and I'm exhausted. My two weeks of feeling good are down the toilet. I'm seeing the Dr. this morning. Enough is enough.