Yesterday morning Lee and I drove up to Tucson to visit with Dr. Z, the Interventional Radiologist (IR) that was “out of network”, and the only IR in southern Arizona that utilizes the latest technology for dealing with nasty liver tumors. After lunch we visted my oncolgist, Dr. P.
We had a very good meeting with Dr. Z. She indicated that based on the position of the tumor I was an excellent candidate for Selective Internal Radiation Therapy (SIRT) using the radioactive isotope Yttrium-90 (Y-90). In this procedure they inject microscopic resin beads (1/3 the width of a human hair) containing the Y-90 into the blood stream feeding the bastard tumor. Yes, that’s right boys and girls….they’re gonna nuke that fucking tumor. The drinks are on me!!!!! Woo Hoo! They block the blood flow out of the tumor to isolate it from the surrounding tissue. So they kill the bad guys and leave my good liver tissue and adjacent organs unscathed. This is outpatient surgery, arrive in the morning and leave in the afternoon…usually. Other than the “glow in the dark” aspect, side effects are normally mild. It is not a given that it will work, overal SIRT success rates are about 60%. But based on the location of my tumor, Dr. Z is thinking more in the 80% chance of tumor annihilation. Oh I like the sound of that, let’s say that again…tumor annihilation.
But before we all get too excited, this does not cure me, it is not killing my cancer. By eliminating my biggest and natsiest tumor it will buy me more time. I will still have Stage IV cancer, tumors can pop up any where. I’ll gladly take the additional time, after all, my public demands it. Everyday I remain alive is one day closer to an immunotherapy cure.
Before the procedure I’ll have another PET/CT scan and an angiogram. Then a week before the actual procedure, they will do a dry run to find the best route to the tumor site and to identify all exits to block any seepage. During this process there is a slight chance they will discover problems that will cause them abort the procedure.
After the PET/CT scan we will have more information regarding the effectiveness of my current chemo, Lonsurf. If it’s still working, a decision will have to be made when to resume it based on the SIRT. Lots of tests and decisions yet to be made, but at least we are moving forward.
Frustration, anxiety and adventure pretty much sums up the past three and a half weeks for Lee and I. You may recall that on my last visit with Dr. P, he decided to refer me to an interventional radiologist to “intervene” with that nasty tumor in my liver that is consistently giving chemo the middle finger. The doctor Dr. P referred to me to is the ONLY radiologist in southern Arizona that performs the latest and state of the art procedure to deal with inoperable colon cancer tumors in the liver.
After six days passed without any contact from the radiologist I contacted the person at my oncologist’s office who processes referrals. She had not done it, apologized and did it that afternoon. The next day I heard from the radiologist office and an appointment was set within two days. Unfortunately the radiologist’s office called the next day telling me that they were not approved by my insurance company since the were out of my HMO network. Medicare routinely approves this procedure and the radiologist accepts Medicare patients, so the kink was just the out of network issue. Lee, my trusted advisor, informed me that the insurance company legally must approve the procedure if it was prescribed by my oncologist. I would have to request an Out of Network Exception. I contacted the insurance/referral person at my oncologist office. Her advice was to refer me to an in-network interventional radiologist (who did not do this procedure) who would refer me to the out of network radiologist who does this procedure. Another week passed and I did not hear a peep from anyone. I called my oncolgist’s office, she said she would follow up. I called the in-network radiologist’s office and was told the radiologist wanted to talk to my oncologist before she could make an appointment for me. In the meantime I had been talking to my oncology specialist case manager at my insurance company. Her job is to help cancer customers by providing resources and hand holding. I asked for her help with the out of network exception, I was thinking certainly she knew the procedure. She told me to have the radiologist that Dr. P referred me to apply for an out of network exception. I called the radiologist’s office and they indicated they seldom make such a request, but she would in my case. After another several days passed, I called my insurance case manager to see if she could provide me an update. She indicated that she couldn’t help me as she didn’t have any access out of network exception status and referred me to the insurance’s normal customer service number. At that point I had a VERY intense conversation with my case manager. It was so intense that I didn’t even swear. I know that is out of character for me, but that was how intense it was. I reminded her that my clock was ticking, that my tumor was growing and as it grew there were fewer options available to me until there were no options. We both know the procedure legally must be approved and the fact that my “case manager” can’t or won’t help me with this needless delay in a life or death situation is obscene. I called the insurance customer service and was told that my oncologist needed to make the request, not the radiologist. ARRGH!!! Our only respite during this time was a visit by Mark and Ellen, dear friends from Oregon. It was a much needed distraction, and we had a grand time with lots of laughter. Mark and Ellen joined us for one of my book presentations and worked the crowd for massive book sales. Mark and I talked late into the night, it was very therapeutic. Evidently my “come to Jesus” talk with my insurance case manager made a difference. She relayed my “thoughts” to her management about their process and she was allowed to get involved. She called me and told me my request was being expedited and helped the radiologist navigate their process. I wonder what happens to patients who are not sophisticated and strong enough or who do not have such a person to advocate for them? Of course that is a rhetorical question, they get screwed. I am very fortunate to have little Lee. I have no doubt that she will be a fierce advocate for me if ever needed.
As Lee and I embarked on a planned road trip to southern Utah and northern Arizona, we agreed end to put all this crap out of our mind and have a good time. The afternoon of the first day of our trip the insurance company called letting me know the consultation had been approved withe the desired radiologist. I immediately called the radiologist and made an appointment for September 22. Time to enjoy the vacation!
After an overnight stop in Kingman, AZ we headed to Tuacahn. Tuacahn is an intimate amphitheater nestled in a red rock canyon in southern Utah just outside St. George. Their season is comprised of three Broadway musicals interspread big name concerts. The cast of the of the musicals are world class singers and stage actors. We saw Tarzan with music by Phil Collins. It was outstanding and the special effects were fantastic, I highly recommend this venue.
On to Page, AZ to explore the amazing topography. Our first adventure was aerial overview in a little Cessna 207 including Lake Powell, Glen Canyon Dam, the Rainbow Bridge , the Horseshoe Bend
The next day we hopped in a Hummer for a nine mile off road trip through soft fine sand and over rocks to the Secret Canyon, a slot canyon in the Navajo nation. I don’t have a bucket list, but if I did, this would be on it!