Lost in Transition

Day 1 (100mg Oxycontin 0mg Methadone)
The transition began today from taking 120mg of oxycontin daily for the past four months. After lunch, within a few hours of starting the Catapress patch I had to lay down but instead wrote a dramatic blog entry comparing cancer to medieval battle, without catapults. The strength of the patch washes over me in heavy waves. It's slightly intoxicating, causes mild drowsiness, and itches slightly. I'll take the Cymbalta tonight for the first time.

Day 2 (100mg Oxycontin 40mg Methadone)
This morning I took my first dose of methadone. Apparently it takes days to build up in your system to generate the desired effects. I woke up with chills and feeling a bit feverish. Haven't seen babies crawling on the ceiling yet. It's mid-afternoon and I definitely feel doped but oddly am a bit jumpy and amped up as well. The patch on my arm continues to itch.

Day 3 (100mg Oxycontin 40mg Methadone)
I think I might have taken a tranque dart to the jugular. I can barely adjust my focus on the keys, probably have the pulse of an elephant, and am rocking a serious case of continmouth. Going down hard for a nap...poot scoots style. At PT they thought the hand looked great. My fingers straightened quite a bit. Six months was a bluff. That was almost impossible to write... Late afternoon: feeling better...while eating some grapes, I opened the cabinet door to put back the mesh grape-washing thingy and realized I had stuck the bag of grapes in its place.

Day 4 (80mg Oxycontin 40mg Methadone)
Although I woke up feeling the least sick so far, I've reduced my morning dose (and the afternoon dose) of oxycontin by 10mg. In general, the pain is doing fine. Even with there being more pain in my forearm, this new cast doesn't have he sting of the last one. After waking up from falling asleep during lunch, I was slightly behind on my meds and felt a bit off. Other than chronic narcolepsy, I'm doing pretty good (or faily well, your choice).

Day 5 (80mg Oxycontin 40mg Methadone)
Day five was the easist day so far. With the introduction of caffine, the drowsiness was signifigantly decreased and the withdrawal symptoms were hardly noticable. Probably a good idea since I rode around the farm all afternoon on a Kawasaki Mule with a 2 year old and three year old riding shotgun. Just before going to bed, I fell asleep standing up in front of the TV. Rad PS Bret made his choice.

Day 6 (80mg Oxycontin 40mg Methadone)
Very similar to yesterday, except without the farm, Mule, caffine and small children to stimulate things. (Keep your mind out of the gutter. That's not what I meant about small children stimulting me) Ash and I were at Duke most of the day. Currently we are still waiting on the results from the CT chestscan.

Day 7 (40mg Oxycontin 40mg Methadone)
Chestscan clean. I could spend the whole day like John Belushi's last visit to Chateau Marmont and still feel great. Even with the dosage cut in half, I mde it through the day feeling pretty good and not overly drowsy. The six iced teas at lunch might have helped somewhat with the latter. Had a little trouble sitting still and watching a movie...kinda jumpy with no attention span. Could just be a bad movie.

Day 8 (40mg Oxycontin 40mg Methadone)
Felt great. Gave into drowsiness and took a nap after lunch, one before dinner, and went to bed at 9pm. Sleep rules!

Day 9 (40mg Oxycontin 40mg Methadone)
After nine hours of sleep, I woke up at 6am. I felt a bit off and couldn't rally focus my eyes. After a 9am acupuncture treatment, my head and eyes were totally clear. During the transition, Marc has focused my two a week treatments to help ease the transition. Dad and I double-dated a lunch meeting with a buddy of mine, Hooper, and his three year old. Very productive meeting... The rest of the day went well, nicely completed with Abbitt and assorted cheeses.

Day 10 (20mg Oxycontin 40mg Methadone)
I'm not sleeping well because of all the water I have to drink to avoid dry mouth and I'm pretty much always really tired. The pain is still OK and I'm not having any withdrawal symptoms at all from such a small dose. By the third casting my hand is really getting stretched out. It's close to straight.

Good News or Bad News?

What do you want first?

Good news:

As usual, it was a pleasure to meet such professionals in the field and especially in the field of sarcoma. The doctors at Dana Farber thought that I had received excellent treatment for my condition so far. They agreed with all the treatments, including surgeries, radiations, and chemo. They also agreed that we are now in a waiting period. One that can be used proactively to strengthen the mind and body as well as research new treatments that are showing promise for cancers similar to the Triton tumors. (If you remember, a triton tumor is an odd tumor that shows similarities to two sarcomas, those of nerve and tumors of muscle and bone. A Triton Tumor is a Malignant Peripheral Nerve Sheath Tumor with Focal Rhabdomyoblastic Differentiation) My oncologists are primarily watching developments in MPNST's even though their numbers are only in the hundreds. The most positive thing taken from the visit is the knowledge that I have some of the country’s best doctors from the country’s best hospitals working together to find the best treatment possible if any problems occur in the future.

Bad News:

Based on the history of my tumor, the local recurrence and metastatic disease within a year of treatment, the sarcoma specialist at Dana Farber believes that another recurrence in the lungs is inevitable in the next year or two. He thought I should stay positive, continue a healthy lifestyle, but mentally and physically prepare myself for another challenge.

Some of you got very angry with him telling me this. I understand why. People want their doctors to be positive and give them hope even if a struggle for health or one's life is on the horizon. I'm a realist. Ashley (who is an idealistic optimist) thinks I'm a pessimist, and a sarcastic one at that. The doctor sharing his opinion with me can be taken many ways. First, we all, including him, have to agree it is only an opinion. It isn’t fact. He can’t read the future from a crystal ball (as I’ve heard several doctors now use as an analogy). He gave me this information to prepare. Prepare for death…I don’t think so, but realistically, it’s something that you have to consider. Prepare for the fight…I think undoubtedly. If the enemy has been spotted on the side of a mountain opposite your camp, you want to know. You want to have your army powerful, organized, and primed. You want to have the wherewithal to attack first and the patience to watch for any threat. The trivial details of everyday life still transpire, but you’re watchful eye is always on the mountain, anticipating their first move. Despite the fact that every cell in your body wants to live out its life in peace, you will fight as hard and as long as you can to preserve yourself and everything you love. “Be Prepared.” To some it means more than to others. I want my doctors to alert me to potential threats rather than hold my hand and tell me everything’s going to be fine.

My army is strong, diversely filled with skill, support, and love. I’ll fight and keep the faith.

PS The pain med patch on my shoulder is strong stuff. I have guns in the house. Stay far away and definitely don’t look at me funny or try to invade my property… I’ll document the transition as it occurs.

Odd Coincidence News:

My new doctor who will lead some sarcoma clinical trials at Duke and I shared the same flight home. While waiting for our plane, we were able to discuss my case further and, after the short conversation, I felt much better about the whole situation. Better is an understatement, considering I had spent a good part of the afternoon pacing downtown Bean Town thinking I might only have a year to live. In a weird twist of events, I was seated beside a nice girl who ran clinical trials for a drug company in the RTP. She had a cast on her arm as well. Even stranger, they were both our first casts and we each had a family member with a below the knee amputation from a farming accident. Is there a psychic in the audience??...

"Brace" yourself

After reading that title, it might be a little cruel. I'm referring to the strong possibility that I might begin the casting process today, where a series of casts are used to straighten out my fingers. I have an appointment with my hand/plastic surgeon and then with my physical therapist. I'll write a post when I return.

As far as the transition is concerned, nothing too exciting yet. The doctor thought it best that I not do any traveling during the time of the transition. So with the buying trip to New York being over this past weekend and my trip to Boston to talk to the sarcoma specialist at Dana Farber, we decided to just wait until I got through those as was home for the ten days.

I'll definitely write a couple of posts during that time to let everyone know how things are.

I have a chest scan on October 1st. I'm not too worried (yet) about this one. Maybe I'll be too busy tossing and turning, fighting off the cold sweat to have time to stress out about things.

In the meantime, here's a shot of Ashley and myself in New York. We had a great time. The weather was some of the best I've ever experienced up there. I think the smoke machine up in the club made the pic a little out of focus.



Take Care,

CP





AFTERMATH:

The doctor's appointment went extremely well. He is still impressed by my progress, agrees that serial casting should be helpful, and thinks the casting might both straighten my fingers as well as increase the range of motion. The graft has totally healed. My thighs are thankful.

The cast is everything I dreamed it would be: cumbersome, painful, and something I'll be wearing for the next 4 to 6 months. Hopefully it will accomplish all the goals I stated, which also include preventing my arm from being washed over the duration. Every week the cast will be removed and a new one will be set with my fingers slightly straighter. After it is all said and done, I'll enjoy the luxury of straight dirty fingers. My physical therapist has had excellent success with this technique and is totally confident using this process. Did I mention "Rock of Love" is her favorite TV show?...I couldn't be in better celebreality loving hands.

I think I'll get a "Bret" tattoo on my cast to celebrate the start of a new adventure...

Shifting Gears

After four months of taking high doses of oxycontin, both my doctors and I agree it's time do something different. So far the narcotic was the best choice to help ease severe pain. After taking it for months, I have become completely addicted to the drug, which is no surprise to the doctors and pharmacists. Within two hours of missing a dose, my body reacts, resulting in cold sweats and feverish sickness. Oxycontin also has other negative side effects that hopefully will dissipate when I switch to the medicines prescribed by my new doctor at Duke's Pain Clinic.

I plan to start with two medications, a patch and a nighttime pill, to both help with the chronic pain and ease the transition off oxytontin onto methadone. High doses of methadone are used to help addicts with addiction to drugs like heroine (at doses 4-5 times higher than mine), but methadone is also used successfully to treat chronic pain. After the first medicines are in my system, I'll start taking methadone in a full dose and slowly lower the amount of oxycontin for 10 days until I'm not taking any. Methadone gradually builds up in the system and should be operating at its full potential about the same time I stop taking oxycontin altogether.

After I've transitioned to methadone, we'll lower the dose to find out how little I can take to keep the pain in check. I'm just trying to find the best way to manage the chronic pain with the least side effects and narcotics. My doctor explained that the goal of these intense pain meds is to attack new pain aggressively to give the body a chance to heal and hopefully figure out how to handle the pain on its own. There is a decent chance that I'll take some form of pain medication for the rest of my life. With help from the pain team, we'll figure out how to make pain management as painless as possible.

Try saying that sentence three times as fast as you can.

Covering the bases...Red Sox style

After discussing the new situation for a while, my primary doctor has recommended adding a sarcoma specialist transferring from the Dana Farber Cancer Institute in Boston who both " is the best medical oncologist for you" and is "planning to bring Duke the forefront of sarcoma medical oncology trials" when he moves down in November. I'm looking into paying him a visit in the next month just to stay on top of everything and already have a relationship established when he gets to Duke.

Since the disease spread, we're going to do a chest scan in two months instead of three as a precautionary measure. Chemo still doesn't seem very likely, but we will discuss its role and possibility in Boston.

I was able to shoot some doves over the weekend at our farm. I had to wear a leather glove and incorporate a slightly different shooting technique, but I was able to join in on something that has been a family tradition for countless years. I made a last minute game time decision to give it a shot (no pun intended) and am very glad I did so. Watts was thrilled about my choice...until we got home and Ashley made us both shower before settling in.

Feeling great. Glad to be proactive. Happy to be doing what I enjoy. Thankful for the opportunity.

UPDATE: My team at Duke got me an appointment in two weeks at Dana Farber. I'm scheduled to meet with a couple of doctors on Tuesday, the 25th. Woody is in charge of dinner reservations Monday...Cali, your suggestions are greatly appreciated.