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Title: Cancer, Chemo, and Clusters Post by RichardN on Dec 14th, 2005, 2:33am Hi All I have been contemplating this post for months now, started to write it a few weeks ago and when I was several paragraphs in . . . . lost the whole damn thing. Puter' has been off getting stripped and a new one built for us and (so far) seems to be working . . . so, . . .will try again. I considered the topic "Cancer Cures Clusters - Get U Sum" (sic) but thought that might be a bit much even though we clusterheads tend to appreciate gallows humor. Now let's see how brief I can be. I will be 59' in March. My CHs started 1/01 as the result of (I believe) a head injury. A year of tests (all normal of course), CTs, MRI, non-working meds and they just got worse and worse. When my wife found this site 2/02, I was having 6-8 per day, KIP 5-9, and sometimes 3-5 per night. Within weeks, with help from you guys I had my first PF day. The next year gave continued relief using Verapamil as preventative and 02 as abortive . . . chronic, but somewhat in control . . . not afraid to take my grandson to the woods. Then . . . and only a very few here know . . . . . March 03, in emergency room for strep . . . then found to be meningitis . . . proceded to encephalitis (sp?). I was in the hospital 21 days, very close to dead for 11 of those days. My wife had the tough duty . . . . I was out of it most of the time. So . .. . survived that and . . . . May, 03 followup from the above . . . blood in urine . . . more tests . . . urologist . . . tumor = surgery (TURBT), supposed to followup with BCG treatments, but could not tolerate that particular physician . . . got referral to excellent urologist who had to take his own "look" (another procedure, another recovery), then on with the six week BCG treatments . . . (during this time I also took accupuncture and herbal treatments from a well-known area practioner which I believe was beneficial in several areas). Well, the treatments took care of most, but not all of the malignancy . . . bladder would have to come out (and prostate at the same time). So . . . . . .. . . I'm getting to the clusters . . . . I promise . .. On to Vanderbilt University where Dr. Michael Cookson performed a radical cystectomy and built a new bladder and re-hooked the plumbing . . . . I don't have a stoma. Amazing surgery. Unfortunately, cancer was in the llymph nodes so chemo was next step. Now . . . . ...... during this whole time, I was also dealing with the clusters. You wouldn't believe the looks I got from various medical personnel when I expressed more fear of the CHs than of the various procedures and potentials for my demise. I took every opportunity to explain the prn 02 and how it worked to anyone who would listen . . . three hospitals and scores of medical personnel . . . and more to come. Then the chemo . . . . Before I started the chemotherapy, I stopped taking the Verapamil (240mg at the time), Altace, Zocor and Zetia. My blood pressure was running low (not normal for me) and low bpm. Also I had confidence in my ability to abort most with 02. Strange thing is, that as the chemo progressed (Gemcitabine (sp?) & Cysplatin (sp?), my attacks became less frequent and severe. By the end of the three months, I even quit carrying my E tank and regulator all the time, until . . . about a month after the chemo I was in a local tavern and they ran out of my Busch NA (non-alchoholic) and I (stupidly) thought, "what the hell, haven't had a bad one in a while", and ordered a real beer. Half way through it and in the space of 15 min., I had the second worst attack, including (the only time) projectile vomiting, total body sweat. Had a full B tank (the little one) in the van but no regulator, so cranked it open with a crescent wrench and sucked it empty in a hurry. Gave them a great show, pacing rapidly arround the room with friends and strangers threatening to haul me to the emergency room and one old gentlemen praying up a storm before I "passed". That was a year ago last Sept. Since then . . . . The attacks have gotten fewer and fewer . . . less and less intense . . . and I'm getting very close to "30 days PF without medication" Had four ounces of wine at Thanksgiving . . . no problem. Had a watered-down brandy a few days ago . . . minor shadow . . . I'll leave it alone. Bob P . . . I never forgot about the project . . .Julia still has the file . . . still think it's a good idea. I've been in and out of the site these last three years, usually to message a newbie and push 02 on anyone I could, but you have all been my family during the above ordeal, even though only a very few were aware. But be assured, I've been rowing along with you. My "numbers" are good and it looks like I might be arround a bit longer. I and my oncologist (who I'm educating about CH) are interested if anyone has had, or knows someone who's had a similar experience. So, with that I'll end the longest post I've ever attempted. Love you guys, Be Safe, Richard |
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Title: I and my oncologist (who I'm educating abou Post by Spike_Inmyeye on Dec 14th, 2005, 2:43am . . . someone who has had a similar experience? I think you are one of a kind. Good luck. |
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Title: Re: Cancer, Chemo, and Clusters Post by RichardN on Dec 14th, 2005, 2:56am We are all "one of a kind" . . . . and I consider myself very lucky already . . . I'll get to see my grandson turn nine in a few months, and if I stay lucky, we'll be moving to our patch of Tennessee woods next year. PFDANs |
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Title: Re: Cancer, Chemo, and Clusters Post by Melissa on Dec 14th, 2005, 3:48am Oh wow Richard... I had no idea. :( Sorry I don't have anything to offer to you, but just wanted to tell you that after reading what you've gone through, it puts the kip 7 I just had into perspective. Thank you... mel |
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