Day One at the U, and I Just Gotta Drop the F-Bomb . . .

Tuesday, January 12, 2010

Lordy, lordy. Poor Bob and his crazy side kick. . . . I seem to develop Hospital Induced Tourette's whenever I'm in a big medical facility—like a little worm infiltrates my brain, takes over my verbal skills and suddenly, I just sputter, cry and swear like a sailor . . . more on that later . . .

Today kicked off the first of what will be many long trips to the U. I'm thinking we should just sell our house and snag a cheap apartment close to the U, for convenience's sake. I think I already paid the equivalent of one month's mortgage in parking fees . . . gotta get a second job just to pay for that, as it appears there's only valet parking available at the U, unless I want to try to piggyback Bob several blocks from the nearest parking ramp, which god only knows where that is. We got him a cane the other day, incidentally, which does help immensely with his walking. Now all he needs is a bow-tie, and he'll be rockin' the "distinguished gentleman" look.

His first appointment was at 7 a.m. We met with the oncologist, Dr. S., who is running the show at this point, to go over Bob's treatment plan, which begins with chemotherapy. We're told that this sarcoma has originated from the bone (his sacrum), so they're treating it as an osteosarcoma, a type of bone cancer. We have also been told that once again, that radiation that he had as a kid, to treat his Hodgkin's, is very likely the cause of this tumor. Even though no other tumors were detected in the full scan done at United, chemo is done as a precautionary and preliminary measure, as sarcoma cells tend to spread rapidly; a small tumor not detected by a scan can quickly multiply and grow and cause more problems. As the doc showed us in a wonderful visual of a pen dot on paper, "This speck represents 100,000 cancer cells." Got it, doc. Big concerns are that because Bob has already been exposed to chemo and radiation, his body, as is evident by the heart attack and now tumor, are already affected. Big concerns . . .

Dr. S then started talking about scheduling the first of chemo on the 14th of January. As in this Thursday. Now that's what I'm talkin' 'bout! Let's roll! The schedule of chemo is still a little fuzzy, we'll have to clarify that when we head back again tomorrow; it sounds like he'll be given three different types of chemo. Two will be administered Thursday and Friday, then he'll wait three weeks and go back for the third. The third will actually require a five day stint in the hospital, as they treat him with lethal doses of the drug and then have to have an antidote to counteract the poison. Miracles of modern (?) medicine . . . sounds rather barbaric, to me, but hey, I'm not the doctor.

Then, we're told that one of the medications he wants to use is a very effective one, called Doxil, but is not approved by the FDA for use on sarcomas. They need to get permission to use it, and have to find out if Bob's insurance will cover it. He made it sound like a little paperwork was involved (or maybe that's just what we heard), and that we could finish it when we came back for the scan. Okey-dokey, Doc, we said, and off we went. Since his next appointment wasn't until 12:45, we went home so Bob could get something to eat (this time, gourmet mac & cheese—withe extra shredded parmesan—peas and sliced Granny Smith apple. Looked like school lunch. He ate it all up! Yum!), rest a little, and then turn right around and head back to the U.

The MUGA scan involved pumping Bob full of radioactive material so they could get a very detailed picture of his heart. The chemo can be very hard on the whole body, heart in particular. Since he's already had a heart attack, they'll take an initial scan now, and then do another one after the chemo run, to check things out. The scan took about an hour. When that was finished, we slowly made our way back to the Masonic Cancer Center, to talk to the financial person about the insurance/drug thing.

At 7 a.m. the clinic was peaceful and quite. By 2 p.m. the place was a zoo, teeming with people of all ages—tiny babies to wizened old men and everyone in between. So many people fighting their own battles with cancer . . . the receptionist saw us, called Bob's name (I nudged him and said, "See? One visit, and already you're a regular!") and said Tomas, the financial counselor, would be with us shortly. Financial counselor? We found a corner in the waiting room and shortly, a man with a portfolio appeared, and was scanning the room. He walked up to us and introduced himself as Tomas and said we could find a room that was a little more private; he lead us down a hallway to a quiet corner of the clinic, and began to explain the situation.

The gist of it was, the drug, Doxil, isn't "allowed" to be used for treatment of sarcomas (evidently, the wonderful, red-tape entwined entity of the FDA has limited the scope of use of this drug), and basically, the U needs to find out how they're going to get paid if the drug is used. We have to send a request in to Bob's insurance company, and it's possible they will deny the coverage. There is a "Plan B" offered by Johnson & Johnson that comes into play if a patient's insurance denies coverage, but it's based on income, which, if they go by our most recent W-2's, we're well beyond that. If one falls within their guidelines, they pay 100%. If not, we pay a percentage of the cost of the drug. "What's the cost?" Bob asked, thinking if it were maybe $500 or so, we could swing the first one. Each dose is $10,000, Tomas tells us. Holy sh@t. . .We're then told that it usually takes 7-10 business days to hear back from insurance companies on their decision.

So basically, if we want to use this drug, we have to wait at least a week until we get approval from either Bob's insurance or the back up plan (for which we'll also have to write a hardship letter, begging to disregard our W-2's and take into consideration that Bob hasn't been working for almost 3 months, and we're not sure when he'll be back working . . .). I looked at him and said, "So we can't start his chemo on Thursday?" Well, you can, we're told, but you will be financially responsible for at least the first treatment, because we won't know anything from your insurance for at least a week . . . that's when the f-bombs dropped . . . no, no, NO!!!! that's not okay! Who has $10,000 just lying around?! How do people do this?! (f-bombs inserted here. . .) You have no idea how hard this has been on Bob—we were told his chemo would start on Thursday, and we cannot, will not wait another week or longer! (few more f-bombs here and there) I wish I could take you and the doctor home with me and live with us for even just a few hours, to see how Bob lives—ZERO quality of life! This is not acceptable! You can't tell me this is the only drug used to treat this type of cancer—we want another option! He needs to start treatment now, not ten days from now! (few more f-bombs peppered here and there . . . lots of crying, too)

Tomas kept his composure with dignity and professionalism, and after my little tirade, he said, "Let me go get Dr. S., and he can talk with you about other possible options." I'm crying, Bob's pacing, and just a few minutes later, Dr. S returns. I let Bob do the talking this time, and after hearing him out, Dr. S says there is another drug that is as effective as Doxil, but he would need a port inserted before Thursday. He agreed that we should do what it takes to get Bob's chemo going ASAP. He said we should still work on getting approval for the Doxil and if it's approved, he could switch drugs. They schedule the port appointment for 8:30 a.m. the following day. Praises be . . . options are good . . .

Wednesday, Jan. 13, 2010

Took Bob down to Riverside this a.m., to get his port, or PICC line, inserted. After the PICC was inserted, he needed a chest x-ray to make sure the PICC line was in the right place. A BIG virtual hug goes to Janet and Linda, the kind and compassionate nurses who took care of him at Fairview, and who thought outside the box in requesting the x-ray machine be brought to Bob, instead of the other way around, so he wouldn't have had to relive the Trail of Tears he experienced at United. A BIG thumbs down to Ms. Crabbypants from radiology who had to bring the x-ray machine (which is on wheels, is not that big, and totally transportable—the nurses say they do that all the time—which Bob is not) up to Bob, and gave him attitude the whole time ("Well, how'd you manage to walk up here?" was one of her wonderful customer-service oriented comments). Bob killed her with kindness, so hopefully she'll think twice about her interaction with patients. Incidentally, Linda has a 19 year old daughter who was recently diagnosed with Hodgkin's. She was moved by Bob's story, and said after seeing what he's going through, she's going to make sure her daughter's follow-up care is monitored closely.

As we were waiting for the results of the x-ray, Bob said that perhaps, when he's through with all this, his mission is to be an advocate for children with cancer, and the importance of screening for potential problems after treatment. If only we'd known years ago what we're finally learning now, about how all that radiation can come back to haunt a person . . .

So late this morning, when we got home from Fairview, Bob was resting, and I was out walking the dogs before work. Bob got a call from Rhonda D., Sr. Reimbursement Analyst/Oncology at the U. She left Bob a message that she received a phone call from Preferred One, Bob's insurance, and got approval for the Doxin. The Doxin doesn't use a PICC line, it's an IV pump . . . so, maybe now we can use his PICC lines for tequilla shots . . . the ball keeps rolling. . . . and the universe sometimes moves in strange and wondrous ways . . .