Round 4 (12/2015)
The cancer is all in one place. Maybe we can get it all out. (Rounds 1, 2 and 3 are reviewed below.)
Well, the cancer is not getting small enough, fast enough. A chemical indicator (CEA?) has gone up, so we did another PET scan. Now only one piece of cancer is left, but it’s growing. So we’ve added to the chemotherapy. Camptosar interferes with the cancer DNA when it tries to divide. Avastin slows the growth of new blood vessels. The cancer can’t get enough blood to grow. The CEA has gone back down. But, since the cancer is all in one place, we might be able to use radioactive beads or surgery to get rid of it.
The radioactive “beads” aren’t beads at all – they are radioactive “big” molecules that can’t pass through blood vessels below a certain size. The idea is to push a catheter up through the femoral (thigh) artery and follow the arteries all the way back to the liver and into the tumor. Then inject the radioactive stuff so that it gets carried into the tumor, and can’t get out the other side because it’s too big. It has a half-life of 11 days, and it puts all it’s radiation directly into the cancer. Then by 90 days (maybe sooner) the radiation is no longer detectable.
Did you know that the liver is the only organ in the human body that will regrow itself? If you use surgery to take out the cancer (and part of the liver), the liver will grow back. You just have to have enough left to keep you going while it grows back.
So what’s the catch?
1. Well, it seems that you have to stop the chemotherapy for 6 weeks before either procedure, to allow the chemicals to get out of your system so that you will be able to heal after the procedure. Stopping the chemo makes the cancer stronger. Will there be enough liver left?
2. If you do the “beads” first to kill off most of the tumor you might have to take out less liver.
So the doctors are still talking about it, and we are getting a little bit stressed.
We’ll have more information in a few more weeks.
Round 3 (5/2015)
The cancer is back and we’re now in round 3 of the fight. (Rounds 1 and 2 are reviewed below.)
The problem started on April 18th. Mimi tripped over one of the curbs in the parking lot in front of our apartment. When she fell, she hit her head against the car door. She thought she had a terrible case of whiplash.
We did something very dangerous. We drove her to the emergency room instead of calling an ambulance. They found she had a broken neck at C1 (top of the spine, the one that usually leaves you paralyzed). She had surgery two days later to put a screw into her neck to hold things still until it healed. She had to stop chemotherapy while her neck healed.
She spent a terrible month in a hard neck brace that didn’t allow her to move her head at all. She even had trouble opening her mouth.
After a month in the hard brace, she moved on to a soft neck brace. That made things a lot better and allowed her to get some work done. She has been in physical therapy since June so that she has enough freedom of motion to turn her head to drive again.
While her neck was healing, the cancer grew again. Now she’s back to chemotherapy and it’s getting smaller again. In the mean time, she has a bad week when she has chemo, and a good week in between. She’ll have a PET scan again in another few months and hopefully, the cancer will be undetectable again.
At the end of the first round, there was no evidence of disease. We decided to discontinue the chemotherapy because of the side effects on Mimi’s mind and the chemotherapy induced peripheral neuropathy (CIPN). That was over a year ago.
Since that time, Mimi has had physical therapy for both hands and feet. She has worked small projects because of the limited amount of time she can work at a stretch. We have completed video taping for Mimi’s Mannequins & Pattern Draping. We have completed most of the base video taping for the first volume of the Make a Doll with Your GrandKid series. We had a decent year if not altogether good.
Then one of the PET scans came back showing a growth where one of the metastasized spots had been on the liver.
Mimi had five radiation treatments. The major side effect was overwhelming tiredness. The primary effect was nothing. The cancer didn’t seem to care. So, now Mimi is back on a different chemotherapy. This one doesn’t cause chemo fog or peripheral neuropathy. It’s principle side effects are constant nausea, chronic fatigue, and generally feeling poorly.
But the cancer is going away again.
And Mimi is designing two new dolls. They will be Spartacus and the High Priestess made in knit fabric with a much simpler and easier patterns.
Round 1 Review: Excerpted from Diary of a Mad Dollmaker, August 18, 2013.
I can’t fully express how much I appreciate the prayers and other forms of positive energy sent into the Universe on my behalf. I know your help has contributed to my healing.
My stage 4 colorectal cancer showed up in 11 months and it’s pretty much gone away in the next 11 months.
The Good News is that my last PET Scan showed the lesions in the liver and the original mass are both almost undetectable. I will have a colonoscopy in the fall to know for sure it is all gone. I have been off chemo for about a month, and I will stay off indefinitely. (Never really cured, only in remission.)
I will continue to have blood-work and have my port flushed on a monthly basis, and do another PET Scan in 3 months.
All my side effects are gone except for 2. This is the wonderful good news for me and my family.
The Not Quite So Bad News is that my year-old chemo brain should clear up in a few months. My family is very happy about that as it is driving them crazy.
The Bad News is that the Neurologist tells me that the Chemotherapy Induced Peripheral Neuropathy (CINP) is permanent. I refuse to settle for that and hope for improvement over time – physical and occupational therapy and massage of hands and feet. I need to get over this now so I can drive again and get back to my first love, teaching.
The Neurologist is primarily concerned with alleviating the pain rather than improving on the function. Eventually, he wrote me a script for the same type of therapy that is used for Diabetes caused Peripheral Neuropathy. The therapist says I will be driving again in a year. (Actually, two therapists, one for hands and arms, and one for legs and feet.) They’ve put me on an exercise program that’s designed to open up new channels for nerve growth – the places that have died have to be bypassed, they won’t come back.
There is no pill, and I would be afraid of it if there was a pill – there’s a problem with side-effects on every damn drug.
Because of the serious neuropathy, handwriting and typing is painful and almost unreadable. The chemo-brain causes me to forget words, have a very short attention span, and very poor short-term memory.
I had to stop working on the DVD on Doll Hair for Dollmaker’s Journey because I simply cannot think clearly or use my hands effectively. I hope to continue this project later this year. Mary Ann at Dollmaker’s Journey has promised to do one if I did not. I hope she does this as there is a need for a good hair book. If I am able to complete it, it will be different anyway. Always room for one more.
Jim is going to concentrate on getting Earth Angels and Mannequins finished.
Jim is working on getting me to storyboard and then voice over instead of talking when I’m on camera. (I write out the script steps and voice over, then we shoot the video clip and record the sound separately.) Jim assembles the clips and voice over tracks. This avoids the problem of having to work and talk at the same time on the camera. I’m hoping to do about three small projects (simple dolls) this year including one with my great grandkid.