There are those who say that all one has to do is to remain positive and that makes a big difference on how effective a treatment is. I beg to differ with that statement because I’ve seen too many extremely positive women die of this disease.
On the other hand, though, a positive attitude can and does help one get through the treatments. It doesn’t change the treatment itself, but it helps me get through the actual time involved, as well as deal with any discomfort that comes with dealing with the disease.
Last week, I drove to San Francisco four times. On Monday,I had my spine checked out and x-rays taken of my neck. The broken C4 continues to heal very well and I have few, if any, problems with mobility and range of motion. The neurosurgeon is pleased.
Tuesday included getting my monthly bone strengthening shot. This shot is proving to be very effective as my bones remain strong and show no danger of imminent fractures. Everyone is happy with this, especially me! :D
I went from the infusion clinic (where I get my shot) to the blood lab. I had ten vials of blood taken from me. I had to chase down a vial that was required by this clinical trial, but it was relatively easy to get.
Following labs (I also had to do the infamous “pee-into-a-cup”test!), I headed over to the radiology department for an injection for a bone scan. I had to have an IV inserted since later on in the afternoon, I would be getting a CT scan with contrast. The IV was hard to get … I’m now labeled as someone with “tough skin and fragile veins.” I look like a drug user now because my arm is riddled with bruises. Still, the mission was accomplished and the injection given. I then had a consult with the clinical trials coordinator.
After lunch, I had my CT scan which was moved up from 4:00to 1:00. I have nothing but good things to say about the medical personnel at UCSF … they are awesome people, sensitive to the needs of their patients, and in my case, aware of my long day and worked tirelessly to shorten it for me. Following my CT scan, I had the bone scan.
Wednesday included crossing two picket lines, one at each hospital I had to go to. Support staff had grievances over how management responded to a strike they had back in May, so they struck again. I felt this one was truly frivolous and I join the ranks of those who say that medical personnel shouldn’t be allowed to strike. While not difficult to cross (no one bothered me), it was uncomfortable.
I had an eye test and got my heart checked out. Both were deemed “fine” and“unexciting.” Yes, normal is good!
All results of the screening tests revealed that I have had no cancer progression and that things looked very stable. This was very good news since I had been off treatment for a month. I was given the“seal of approval” to start the clinical trial on Monday.
I didn’t have to go back until Friday where another four vials of blood were drawn. There’s a difference between blood taken for screening purposes and blood taken for the actual trial purposes. I met with the clinical trials team again,finalized details and went home for a weekend with my family. Full of thanks and praise that everything was stable.
On Sunday night,I drove up to the city again, only this time with no traffic! I didn’t know I could get to my destination in only an hour (It usually takes a minimum of an hour and fifteen minutes and sometimes, up to an hour and a half or more.)! I checked into a hotel (paid for by the drug company) and got ready for bed.
I have to admit, it was hard for me to leave my family on Sunday night. It brought back emotional memories of my leaving to go to Hong Kong for my chemotherapy treatments. I didn’t like it at all. However, after making the drive, I admitted that I enjoyed the lack of traffic. I like knowing that while I’m spending two nights away from home, that I’m only a short drive away as opposed to the 1,134 miles Hong Kong was from our home in China.
I had a hard time sleeping on Sunday night … I admit to being slightly nervous about the trial. I pray constantly that this is what God uses to bring about healing,even though the medical team admits up front that the treatment is about control and not cure. I know God can choose to intervene in a miraculous way and bring about “no evidence of disease” through this trial and that’s what I’m asking for.
Monday dawned bright and clear. I woke up with a song in my heart. After months of waiting (we originally tried to get me in the trial back in August) and after months of tests, scrambling for biopsies, etc., the trial was going to begin! I arrived at the hospital at 7:45 a.m. and was almost immediately placed into my hospital room. I was loaded with two project bags (one with books and notebooks and one with cross stitch) and my bag of vitamins and supplements. I was told to bring the actual bottles and not just a list, so that’s what I did … all fourteen of them!
The pharmacist went through all those bottles as I laid in the bed with EKG wires hooked up to me. I haven’t taken any of them in the month I was off treatment (thinking I needed to have everything out of my system) and she applauded that action. She went through each one, making comments and asking questions. At the end, she only eliminated four of them … CoQ10, bee pollen, kelp (iodine) and the probiotics. I had already decided to discontinue the bee pollen (only have four pills left) because it didn’t do anything for my white blood cell count, but I was surprised by her asking me to discontinue the others. The main reason for doing so makes sense, though. I’m taking an experimental drug and there has been no studies on the interaction of CoQ10 and iodine with this drug. They don’t know if there would be problems with them or not, so to be on the safe side, not taking them is best.
She told me that the trial drug is classified as an oral chemotherapy and given the chance that I could experience what’s known as a “numbers crash” that taking a live culture (found in probiotics) isn’t recommended. That one’s out for now.
All in all, I was very encouraged. I do a lot of reading about vitamins and supplements (I know that supplements are not regulated, but I use the Sloan Kettering site on herbs and botanicals for trustworthy information) and to find out that most of what I was taken was approved by the clinical trials team was nice and reaffirming.
I had to have another IV placed for the many blood draws that happen throughout the day. It took them three tries … my veins did not cooperate very well. Ten wires were left “stuck on” various parts of my body as my heart is continually monitored throughout the day.
My first dose of the trial drug was at 9:25 a.m. I had blood checks done every twenty minutes the first hour and then every thirty minutes the second. Then it dropped to once an hour and then to once every two hours. So far, so good. No negative reactions.
While waiting, I received my lab results from last week. There is one tumor marker, CEA,that has proven to be very reliable indicating progression of disease for me. It has risen steadily ever since my Stage IV diagnosis. It’s gotten to where I expect it to rise each month and I’m no longer emotionally crushed when it does.
Given that last week’s scans showed no progression, I was curious about what the CEA would be. I told Art, “I know it’s going to be higher, but how much higher is what I want to know.” I was absolutely amazed to see that it was the same as it was last month! This is confirmation that the disease is, indeed, stable! I almost cried with gratitude.
Stable isn’t the same as a cure, but it can be a start. We have to wait and see. However, it gives me increased joy for this day and for what I can do in it. This stability may not be permanent, but it’s what I have for now.
The day ended a bit earlier than expected due to their getting me “dosed” so early. They needed a full eight hours of observation, so I was out of the hospital at 5:30! I grabbed some food and went back to the hotel to enjoy the 49er football game on TV. Fatigue hit by 9:20, though, and I was sound asleep by 9:30.
Tuesday will have less time in the hospital … about 6 hours. It should be about the same as Monday except for the fact that I have to fast leading up to the dose point and then another four hours! I think I will be hungry for lunch!
Thank you for sharing my journey. It’s only by God’s grace (not by positive thinking!) that I am still here and doing as well as I am. I continue to pray for those who also have this disease (and other difficult diseases and/or situations) and ask that you do the same.