The Ripple Effect

It was a week ago that Jim finally got the call that the Revlamid was being mailed to him. He was treated to an oral interview to determine if he understood (OMG, enough already!!! ) that this should not be handled or otherwise transferred to a woman of child bearing age. The FDA is nothing if not stupefyingly redundant.

Thus far, the treatment has been uneventful. All he does is take three pills daily for 21 days. They then give him a week off so they can be sure he understands about potential birth defects in any current children he intends to launch (father) as well as talking with his physician to make sure he tells Jim to be careful. Aaaaaarrrgggggggghhhhhh************ the sound of Linda going screaming into the street. This medication costs us $20. but our insurance company pays $18,000 per month. It might have been more cost-effective if they had just approved the second MRI on time, so we could be gearing up for the SCT now. Hmmm....

I have recently been rolling around in my head the thought that we really have no way to know how our lives and especially our actions can have a ripple effect far beyond our wildest imagination. I recently learned that a family originally from our town, who are home-schooling their four boys (the fifth boy is too little) say the Rosary every day before class begins. And each day, Jim, who never met them, is remembered in these prayers. Every day, four little boys pray for a person they don't know, yet they do it each day. Wow. I remember back when my dad was having his fourth kidney installed. There were prayer groups of all denominations offering up their faith by petitioning for his recovery. This kind of effort isn't correct for everyone... it must come from sincere belief. But there are a thousand other responses that someone's ripple

elicits that make us better people.

Little ripples emanate to places far from the source. Sometimes we become a horrible warning, (!) but more often the result is a selfless response. Being aware of this should encourage us to take careful aim as we pitch our pebbles into the water. Certainly, none of us is alone.

Twiddling......still Twiddling

Jim had his orbital MRI yesterday. (photo to right is NOT it.) Laura took him in and back. The "team" is still trying to track down Revlamid ... weird that bureaucracy and health warnings have made this drug so elusive. And sorry, I have the same problem with this as with other "warnings". While I understand that Thalidomide (the black sheep of the Revlamid family) causes birth defects, pregnancy is fairly low on my list of concerns, somewhere between terrorists fouling my personal Cabernet Sauvignon supply, and the threat of a heat-seeking missile homing in on my disconnected septic tank.

One can only imagine the warnings. "Do not share chemotherapy medications with others. (!) Do not allow children to play with this drug. ( As the clothespin game? Drop the Revlamid in the bottle?) " May cause drowsiness, so do not use drug while sky-diving." and the ever-popular " This drug should not be used as a flotation devise." Who thinks these things up? My personal favorite of this genre came on a propane torch labeled, "Do not use this device for drying hair." In the dark, sick recesses of my mind, a little smirk still flickers at the mental image.

My two cents... we should do far less warning and presuppose that people have a grain of common sense. And those who don't should proceed at their own risk. If, however, these warnings are merely designed by bureaucrats and liability attorneys to sustain their billable status, we should be rising up as one to tell them to KNOCK IT OFF!!!

Making progress on the phone

Third blog entry this week!! Well, things are happening. Starting the new chemo was going to require authorization from Tufts to pay for the Revlamid. Thanks to an advocate at Tufts who went a little extra distance, that has been approved. She also claims that the second MRI had been authorized... only nobody knew about this. The SCT has been postponed because the orbital MRI was missing. Thanks to our guardian angel at BI, we have it scheduled for tomorrow night at 8:30.

Now, does this mean we could possibly get back on track for June 9? Or does it come one day too late. Or have his numbers risen too high to get the SCT at this time?

Tune in tomorrow!

Another Change of Plan

Our heralded June 9 date has been scrubbed for Jim's SCT. It will be rescheduled, but it won't be happening in June. Long story, but the one MRI still has not taken place, the ophthal-mologist is on her second vacation in three weeks and won't be back until next Monday to do battle with Tufts. Other people are trying, but meanwhile, Jim has been off chemo for a month, and today the blood tests revealed he is losing ground attained by the chemo before. So he will be going back on chemo... this time with a drug called Revlamid. It is in the family of Thalidomide... the drug that caused birth defects in the 1960's. Turns out to be powerful in fighting cancer, as long as you meet certain strict criteria that makes it a pain in the butt to secure.

This is disappointing, to say the least. He felt especially bad today, even before they told him. Stomach problems and back pain requiring more pain killers than he has taken in a long time. And now this. We were so pumped up!

We have reached a point in our lives where it is unnecessary to express surprise, or register disappointment out loud. It is what it is. That's all.

Bummer.

And the Beat Goes On....

Jim's MRI came back fine, although in their infinite wisdom, Tufts insisted on taking the two ordered sequentially instead of together, on the off chance it would save money. While I was annoyed, I am also horrified by how much this is all costing. We pay a relative pittance, and each hospital visit is a staggering amount. Anyway, we need to see the second MRI that is more detailed before that problem can be entirely ruled out.

Back to Jim. He has an ultra-sound on Monday, to zero in on his vision issues. Later in the day he will get the first dose of the custom-made vaccine from his stem cells, part of the clinical trial he is in. Thursday, he will enter the hospital for an overnight, to receive cytoxan, a powerful chemotherapy drug that will kill the cancer cells (and unfortunately many of the healthy cells) in his body so that the when they go fishing for the stem cells, the blood is as free of cancer as possible. Once he has this done, he will go on a daily regimen of a drug to coax the stem cells out of the bones and into his peripheral blood. (the stuff outside your veins) for about a week. But that puts us ahead of ourselves in this gripping tale, so I will leave you hanging at this point. Tune in next time for....

From our "never a dull moment" department, I got a call this evening from Lynn who was en route to Logan to pick up Chris from his weekly jaunt. In the middle of the Ted Williams Tunnel the entire outside of Lynn's tire tore off. We don't do any steenking nails, or flats. Nope, we shear off the entire outside of the tire....for the second time in a year. This happened before on the Mass Pike coming from a day at a lake last summer. This time, she said she nearly lost control of the van completely. Luckily, everyone is okay, the state police came and towed her to a lot in Southie and even put her spare on for her, at no charge! Something Free in Boston!! (shhhh, don't tell Deval) Can you believe it? Any of it? Thankfully, everyone is fine. She is one intrepid lady!

Some Stats on Jim:

He started out with MM in 75% of his bone marrow. That has been reduced to 14% thanks to 8 rounds of chemo.

He has lost about 60 pounds, and 5 inches in height, since August. He eats almost nothing, yet despite the wasting in his arms and legs, he still has a modest gut. My conclusion is that it pays to be a little overweight to begin with. If he had been 160 at the start, he would be 100 now. At least thats my story and I'm sticking to it!

Happy Mothers Day ladies! Men, I don't care if she's "not your mother," You got her into this, you should certainly do the right thing! (Can you tell I have "been there"?)