I have no idea what I'm doing. More or less sums up my entire cancer experience I suppose. Laura Lynn keeps telling me to let somebody else do this for me, but it seems like something I ought to do. I resisted doing this at all for some subconscious reason - maybe thinking that the less that I publicly acknowledged this cancer the quicker I would beat it and get my life back to normal. Maybe I just thought it would be better to be private about the whole thing. Now that things have gone sideways maybe I just want to change the mojo or something. Here is a basic timeline of what I've been through to date:
1/1/17- 1/1/18 (Approximate) - I experienced a litany of symptoms of GI disturbance. I would variably label these disturbances as IBS, mild celiac, reflux, indigestion, lactose intolerance, or maybe, but surely not, cancer.
1/1/18- 3/31/18 - All of my dietary changes have failed to effect any improvement in my symptoms. I have frequency, urgency, discomfort etc. I have noticed my exercise tolerance has decreased substantially. I have two episodes where a fairly substantial amount of blood is noticed in the commode. I call a medical school classmate of mine who is a gastroenterologist to see if she can get me on her partner's schedule. She does. I see her in the hallway at hospital and tell her I think I have cancer. She tells me to shut up.
4/13/18- Endoscopy. I have cancer.
4/13/18- 5/14/18 - My family and I frantically interview oncologists and surgeons while radiologists and pathologists work their way up to my definitive diagnosis: Stage T3 N1 invasive rectal carcinoma.
5/14/18- 6/22/18 - Chemotherapy in the form of a drug called Xeloda and Radiation focused on the tumor in my sacrum occurs during weekdays. I have the weekends off. I very quickly notice that the Xeloda creates severe chest pain. I take countless GI remedies to try to stop this, but I oddly notice that the only thing that seems to help is lying completely still in a supine position in a dark room (more on this later). Not too dissimilar to the treatment for a migraine. By the third week of radiation to my bunghole I notice that I have lots and lots of pain with defecation. A friend with a similar diagnosis to me tells me that it is like $hitting razor blades. Yes, I say. It is.
6/23/18-8/13/18 - This period, in retrospect, was like Camelot. I felt a little better every day. By late July I got married and spent two weeks in Italy. It was amazing. I felt like "the old Geoff" again. I stopped working in preparation for surgery.
8/13/18 - Robotic assisted colorectal resection with proctectomy, reanastamosis, and creation of an ileostomy. This was not a lot of fun. But, I did learn a lot about ostomy bags and now consider myself a pro.
8/31/18-9/3/18 Readmission to the hospital after getting feverish, having lots of low pelvic pain and pressure, and the ostomy bag seemed not to be putting out any more goo. They gave me IV narcotics for the pain in the ED, but I think this backfired and maybe contributed to urinary retention. In any event, the most painful experience in my life up to this moment was radiation induced proctatitis (see above). It is now the sensation that my gonads would explode from a massively over-distended bladder and a large peri-anastamosis abscess. After starting a foley catheter (at my desperate insistence) and getting out over 1Liter, they take me to a procedure room where an amazing Interventional Radiologist drains the abscess. They leave behind a semi-rigid plastic drain which exits from my groin and is attached to a Jackson-Pratt reservoir. The idea is that the abscess will drain and resolve the problem.
9/3/18-10/30/18 - The Drain. The never ending drain. It just kept on and on and on. There was a solid week where we had evacuated Charleston to avoid Hurricane Florence and drove to my parents home - turns out this was INTO the storm (its been that kind of year). We sat in my little home town playing Trivial Pursuit and watching the drain.
10/30/18 - After nearly 8 weeks the drain comes out. I can't decide in retrospect if I was just moaning and complaining and the doctors took pity on me or what. The drain was still draining when it came out though.
11/13/18-11/16/18 - Chemo training and a procedure to place an indwelling catheter to deliver the medicine that will "consolidate" the care and maybe render me cured? That was the hope I guess.
11/19/18 - Chemo starts. Modified Folfax. No big deal really. I take home a pump that lives on my hip to infuse the 5-FU (fluorouracil). 11/20/18- 2pm - I get chest pain that mimics the pain I had while on Xeloda. I lay down in a dark room. 8pm -4am-ish I am vomiting up my guts and experiencing the worst chest pain I can imagine. I think this is my new worst pain ever. 11/21/18- 9am We start calling the infusion center asking when we can come in to get the pump removed. I am utterly miserable with an icepack bound to my chest. At the infusion center I tell them that I think I need IV fluids. They agree. During the administration of this the oncologist on call for the day comes by to evaluate me and tells me to go to the ER. They offer an ambulance but we have the kids so we subtly tell them that I have to go to the hospital to get some tests. I get dropped off at the ER where they promptly hook me up like a Formula 1 pit stop. I have ST changes on 2 leads of the EKG (an indication that I am in the process of having a heart attack) I get admitted, the pain begins to subside, they give me nitrates and obtain an echocardiogram.
11/22/18 - Thanksgiving! We work pretty hard to get discharged from the hospital and we are successful, but its so late we decide to have dinner the following day. I no longer have chest pain (hooray!) but I now have an utterly miserable headache due to the nitrates (more lying flat in a quiet dark room).
11/22/18-12/12/18 - Things have unraveled even further in my care plan. Now I have a cardiologist that wants a heart cath and a cardiac MRI. My oncologist says that I have had a somewhat rare side effect of the 5FU that results in severe coronary vasospasm. He indicates that his inclination is to simply stop chemo altogether, but he would like to get a corroborating opinion from his mentors at Duke University. Fine. Can do. Except. I've started having some inexplicable low grade fevers and I'm having some increased output PR (that's Per Rectum. It is gross. This disease has gotten me pretty comfortable with gross). So he wants to get a new CT of the abdomen and pelvis before I head up to Duke.
12/14/18 - We get the CT in the morning and make the executive decision to go ahead and get on the road to Duke. En route we get a call from the oncologist. The only worse news I can imagine is if he had said, "hey, you're dead." In which case, I couldn't have picked up the phone. Anyway, he actually says that the abscess is back AND now there are three metastatic lesions on your liver. My disease is instantly Stage IV. I have my son in the car so I act as normal as possible. I text Laura Lynn (who is sitting next to me driving) that it is very bad news. Poor thing. She had to drive another hour with this vague knowledge and watching me periodically stuffing back tears.
12/15/18-12/20/18 The entire purpose of the meeting at Duke changed, of course. Again the family and I are in overdrive trying to assimilate lots of new information, meeting and talking to new doctors, and deciding when and where to get care. We returned home to Charleston from Raleigh/Durham, predominantly to get my son home. The Duke folks wanted to admit me then and there. I have had lots of new testing this week with still more to come (liver biopsy, drain re-placement, chest CT, liver MRI, cardiac cath - the last of which was stone cold normal! Its a miracle!) We now have a tentative plan to complete what we can do here locally and then return to Duke for what sounds like some pretty heavy duty liver surgery and possibly some somewhat experimental chemotherapy.
If you've made it this far I am impressed. If you just read the first bit and said, "Hey, Geoff's sick, I'm going to say a prayer." That is likely what I would have done. It has been cathartic to get it all down in writing. Thank you all very much for your continued prayers and support. I will now do my best to update this thing periodically.
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