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Latest update on my health situation: Over the last six weeks I completed four sessions of infusion chemotherapy. Last week I was sent for a new set of CT scans. I received the report from my oncologist on Friday—all  clean! There is still no visible sign of spread or recurrence. This is the best possible news.

Next up, I start six weeks of chemo-radiation (also known as chemoradiotherapy). It involves a combination of pills (Xeloda—the chemo pill equivalent of 5-FU) along with radiation five days a week for the six week course. The main side effects are fatigue, nausea and some digestive stuff upon which I won’t elaborate. When I complete that and get rescanned, we determine what if anything follows. If I continue to scan clean, I may be able to transition to a “monitor only” status which would be a welcome relief. Until then, I’ll do what I’ve done all along—I’ll take one day at a time.

In the meantime, I hope to get back to posting here instead of just Facebook or Twitter. Maybe I’ll add something interesting. Anything is possible. (Who can argue with that last sentence?)

Did I mention how much I love my wife? She’s the quiet force that has made this moment possible.

Love to all,

- Christian S. Mann

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Londen Carter Mann 2
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Londen calling…

I am filled with gratitude to my creator for the joy of announcing that my first grandchild, Mr. Londen Carter Mann, arrived to this life at 3:35 pm Eastern Daylight Time in Niantic, Connecticut. His father, my son Chandler, is well. The newest Mann and his mother, the lovely Kaylie, are both healthy and happy. Londen weighed in at 6 lbs. 2 oz., measuring 17″.  Is there any wonder why I have such a lust for life? Could there be a better reason to stay alive than this? I am blessed to be able to experience this moment and to share my excitement with so many people who have enriched my life. Yes, I am in love with this little Mann. I can’t wait to hold him myself. In the meantime, you may call me “Grandfather Mann”.

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Bombino rocks.

Check out this video… I saw this act on “Later with Jools Holland” and was so intrigued by the music that I bought the album on iTunes. Well worth the $9.99. The sound is so different but it absolutely rocks (in my opinion). So there, I’m touting it… if nothing else it’s a welcome respite from medical updates. I’m tired of me. This is more interesting or at least, it adds a little balance to the site, no?

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Christian’s Update!

We met today with Dr. Mark McNamara, Christian’s new oncologist, who reviewed the recent CT/PET scans, the pathology results from the February surgery (including the tumors and lymph nodes that were removed), and his records dating back to the radiology that produced the diagnosis. The doctor examined Christian and asked some basic questions about the last couple of months. I’m thrilled to report that the surgery seems to have eliminated the cancer from Christian’s body. Can I reiterate that? There is no evidence that the cancer has returned or even that there is any cancer currently left in his body. It appears that the surgery SAVED HIS LIFE.

So the question now is: what’s next? Do we resume chemotherapy to ensure that all possible options are pursued? If so, what drugs are used? Is radiation an option? What the hell does “the margins weren’t clean” mean?

Dr. McNamara was very thoughtful and quite patient with our questions, and his tentative recommendation is that Christian should resume chemo in the next few weeks. If there are any microscopic remnants, he suggests that we strike now while the cancer is weak and Christian is gaining strength. It is possible they will use Gemzar, Xoloda, Cisplatin, or some combination of those three. It is possible that radiation will be used in concert with the drugs they select, although they cannot target the liver with radiation. It is possible that the microscopic cells will die off on their own. It seems there are few definitive answers, but I think we’re getting used to that. Still, the doctor pointed out that Christian’s condition is almost unprecedented. Usually patients in the advanced stages of intrahepatic cholangiocarcinoma are not resectable, and since Christian was–and successfully so!–there is little precedent to guide the decisions that need to be made. In other words, he is indeed a walking miracle. They will continue to monitor him for recurrence, since this can be a mighty pesky malignancy, but the last few weeks have made a remarkable difference in his prognosis. At the very least, he’s gone from stage IV to stage III, and with the removal of the affected lymph node, it might even be considered stage II. (We know they’re just semantic benchmarks, but the world suddenly looks a lot more hopeful through stage II glasses!)

We both know that the love and support of so many people has brought my husband to this point, and I’m grateful. Thank you so much for your messages, your calls, and your good wishes. We’re both so incredibly grateful!

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Christian’s Post-surgery update: Week 3

He’s getting stronger, healthier, and just flat-out better–which means that Christian should be writing his own updates by now! but I’m happy to give you today’s skinny.

We met with the two primary members of the surgical team–Drs. Selby and Kulkarni, who are nothing short of amazing–and they are quite pleased with both their handiwork and Christian’s overall progress. The bile drain and staples have all been removed, so as the visible and internal incisions begin to heal, the doctors cautioned him to continue to take it easy. No golf, no weightlifting, no strenuous exercise for a couple of weeks more. He’s transitioning off all of the painkillers, which will help to bring his bowel functions back to normal. Everything related to the surgery looks great.

The real question is, of course, the presence of cancer in his body. We know it’s there. We know that we need to be vigilant. We just don’t know where it is yet. Sometime in the next week he’ll have a baseline PET scan, in which radioactive glucose is injected into his body and is quickly synthesized by the cancer cells. As a result, doctors can see where the cancer remains so that they know how to proceed with the next stage of treatment, which will almost certainly be chemotherapy. Whether or not the next stage of chemo is hair-friendly remains to be seen. At this point, who cares?! Our goal is to kill what’s left and let Christian get back to a normal life of work, friends, family, and work. Did I mention work? And yes, he’s dying to get back to work.

Keep April 19th in mind–it’s The Return of the ERCP, and it promises to be a fun family experience for all! (Except Christian, of course.)

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Christian’s Update: Home!

Just a quick note to let you know that last night Christian was released from Keck, and tonight he is feeling MUCH better. He’s still dealing with some pain and discomfort, but he’s up, around, and punchy. I’m so incredibly grateful. We’ll start the next round of doctor visits early next week, and the next procedure–to remove the stent via the dreaded ERCP–is scheduled for April 19 at Keck. I am encouraged by reports that I read relating to the long-term survival rates of patients with intrahepatic cholangiocarcinoma. In the meantime, we’ll concentrate on getting his strength back, making sure that he’s eating fresh and healthy foods, and just letting his sliced-up body recuperate. I do hope his voice will come back, but given that he can’t let it rest for any length of time, that may be an unreasonable expectation.

He’s back on his feet. And thank you, thank you, and thank you again for all of your support and love. May you all be as blessed as I feel.

Cheers,
Melissa

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Christian’s Update: Day 14

Today feels like the best of times and the worst of times: everything looks great except for the enormous amount of pain that has refused to go away with good grace. There are several explanations for what he’s experiencing: 1) there is air below his diaphragm as a result of the ERCP; 2) the new covered metal stent (and there’s a photo!) is a little bit larger than the bile duct, and stretching the duct is causing some pain; and 3) he might have a touch of pancreatitis, although there is still some disagreement over this. It might just be that he’s got the wind something terrible. Additionally, his temperature and his white cell count are both slightly elevated, which could indicate an infection or inflammation, so he’s on heavy-duty antibiotics. And pain meds. Lots and lots of pain meds, although they’ve had limited efficacy over the last 24 hours. He’s a lot better tonight. In fact, he’s so much better that he feels like firing someone. I take that as an excellent sign.

Bottom line? He is steadily improving, despite the discomfort of these procedures and the residual pain they cause. Next up: food. He has to eat and eliminate before they let him leave. And best of all, we’re one day closer to being homeward bound!

Cheers,
Melissa

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