This started as a journal at the very bottom, with each update entered as time allowed and there were developments to report. Alas, the impact of treatment kept me from keeping that up after March but as I've added the intervening months I followed the same pattern. This will make more sense if you skip to the bottom of this now-lengthy page and read your way back up.
30 December 2014
Anastamosis, according to Wikipedia, is "the connection of two luminal structures" — as if I knew what a luminal structure was. I love words, but this adventure has had more than its share. It turns out that a luminal structure is a tube, resection is the removal of all or part of an internal organ, and after resecting a luminal structure, a surgeon will anastamose the two ends. In a bowel resection to remove a tumor, the anastomosis site is the area most likely location of a regrowth of a tumor similar to the one that was removed. So I was talking with medical types, or overhearing them talk among themselves, about the impending inspection of the interior of my colon today. Colonoscopies are scheduled more frequently for those who have had colorectal cancer operated on. Personally, I think Manny just wanted a chance to revisit his work and congratulate himself on the spectacular job he did back in February. Apparently, all was well: no polyps, no biopsies.
Have you ever noticed how medical language strips all the interest from conversation? Those four words don't excite the reader, they lack any sense of excitement, and very little indication of whether the news is good or bad when, in fact, it's the best news possible. To get that across, Manny told Larkin that I didn't need to come back for the next colonoscopy for three years instead of one. Having been through the "prep" process three times this year, there was no question about how good that news was.
2 December 2014 — Followup report
Met with Wendy today to get the results of last week's tests. Bloodwork indicated normal kidney function (no permanent damage from all the chemo) and a CEA (carcinoembryonic antigen, a marker for tumor activity) of 0.6, solidly in normal territory and the lowest level I've had all year.
CT Chest: "The heart and great vessels demonstrate milde atherosclerotic calcification. No hilar or mediastinal lymphadenopathy is present. The lungs remain clear. No effusion of pneumothorax is prsent. Osseous structures demonstarte degenerative changes. Impression: No evidence of thoracic metastatic disease. No significant interval change."
CT Abdomen and Pelvis: "The liver, spleen, pancreas, kidneys, and adrenal glands are unremarkable. The gallbladder is not dilated. No bowel dilatation, free gas, or free fluid present. No abdominal adenopathy is seen. Postoperative changes are seen in distal colon. No pelvic adenopathy present. No inguinal adenopathy is seen. Osseous structures demonstrate degenerative changes. Impression: Postoperative changes in the pelvis. No evidence of metastatic disease."
I still need a colonoscopy before the end of the year, but this all sounds like good news.
28 October 2014 forward — Recovery
As I write this final entry (28 November), the world is coming back into focus. Consumption of toilet tissue and Immodium tablets have dropped precipitously. I can walk reasonable distances without discomfort. Best of all is the gradual return to clarity. What the doctors call fatigue manifests itself in needing more sleep, although additional sleep doesn't seem to help at all, but mostly I experienced a mental "fog" that became a real barrier to actually getting anything done. I've been fighting this for quite a while, actually. There is a phenomenon called "cancer-related fatigue" that almost every cancer patient endures as a result of the cancer, the treatment, or both. I've been feeling a bit "off" for several years, which I suspect was the result of the larger tumor growing, which could have started as much as five years ago. Early in October I noticed an intermittent problem with this site and was completely wrong in diagnosing it, my clumsy attempts at fixing the wrong things left the site completely offline for six weeks. I just couldn't do a thing about it. Now I can, and the daily mailings have started again after an eight-month hiatus which followed a period of pretty spotty performance on my part. As you can see, I've broken through the fog well enough to get the site back online and the mailings have restarted.
I've always suffered from Seasonal Affective Disorder at this time of year, so I may actually be back to normal already in which case the coming of spring should bring a level of function that I haven't seen for years. Hope springs eternal, but the progress in the last month has been very welcome already.
25 October — another CT scan
Four weeks after the last radiation treatment I was back at Whidbey General. Wendy wanted a thorough CT scan of the pelvic and abdominal areas to look for any hint of malignancy that might have been missed by Manny's knife, Wendy's drugs, and Will's photons. I'll learn the results on 2 December. All signs are that I'll have quarterly blood tests for cancer antigens and an annual colonoscopy from here on out. Other than the heightened scrutiny, there will be no other effects and no on-going medication.
16 September to 27 October 2014 — Radiation
The final insult to my system, I mean treatment, was radiation therapy. There are no linear accelerators on Whidbey Island, so this was scheduled at Providence Regional Cancer Partnership at Everett. The original plan was for forty treatments, one every weekday, which was later reduced to twenty-eight. From pulling out of my driveway here at Freeland to my return from treatment is at least three and a half hours, covers about forty miles, and involves about $15 in ferry fares, which made the plan look pretty formidable. I was relieved to learn that the American Cancer Society has a program called Road to Recovery in which a volunteer driver would pick me up at the ferry on the other side, take me to treatment, then drop me back at the boat, cutting my travel costs dramatically. I was able to arrange to use that about half the time.
The treatment planned used a Varian Trilogy (see animation of treatment process and the actual machine and two of the technicians who treated me) linear accelerator, a system that involves a high-energy photon source along with a a CT scanner. Once I was laid on the table the system would extend the CT radiation source and sensors, rotate around my body, and send the results down the hall to Will Wisbeck, the radiation oncologist. Based on that imaging, Will could adjust the shape and duration of the actual radiation which was administered in four short doses from four directions to minimize the damage to my skin and other tissue. Total time with the Trilogy was about ten minutes per session, actual exposure to the beam was about eighteen seconds, a frustrating relationship between the functional time and the total time away from the office!
The radiotherapy team talked about treating me with photons. All electro-magnetic radiation can be seen as either waves or particles, given the perversion that is quantum physics. At the energy levels involved in my treatment, what comes out of the machine is photons if you are thinking particles or X-rays if you are thinking waves. I think the team talks photons because it doesn't sound as scary.
But wait, there's more! To achieve maximum results, radiation is often combined with chemo, in this case it was back on the capecitabine, although at a lower dose. But that meant that the Hand-Foot Syndrome which had almost completely let up after the main chemo regimen came back after the first couple of weeks. I was more aggressive about applying moisturizer to my feet this time so it never got as bad, but I still wasn't doing any more walking than I could avoid. Also, the radiation irritates the bowel lining, so there was no letup in my toilet tissue consumption.
Possibly the worst part was what Will predicted as "fatigue", an effect that is cumulative. Although I was feeling pretty good, almost energetic, at the start of the radiotherapy, halfway through I couldn't get much of anything at all done and on Saturdays I was sleeping most of the day.
25 March to 14 August 2014 — Chemo
The dosage for chemo is based on a formula that includes that patient's body surface area (measured in square meters) and the level of kidney function. The idea is to push as much of the poison through you as you can stand, but if the kidney function is reduced the dosage needs to be reduced so the kidneys can keep up. The body surface area is calculated based on height and weight. So at the start of each three week round of treatment I had to report to the lab for blood work 45 minutes prior to seeing the oncologist, which was enough time for the lab results to get into the system. During the first round Wendy did some homework and learned that the combination of oxaliplatin and capecitabine was only 5-8% more effective than capecitabine alone. She quickly decided that it simply wasn't worth continuing the oxaliplatin as there was no way to predict whether I was now acclimated to the oxaliplatin and thus in no risk or if I was now sensitized and thus at risk of more severe seizures. So no more infusions, other than a one-time treatment of potassium chloride when my potassium levels were badly depleted by diarrhea. It was during this time that the disastrous attempt at lethal injection in Oklahoma was in the news. Guess what the final compound in that process is? Yes, it's potassium chloride, to stop the heart.
One of the known side effects of capecitabine is Hand-Foot Syndrome, although there are more scientific terms as well. This includes numbness, internal capillary bleeding, and cracking and peeling of the skin. This effect comes on slowly but by the sixth round I was using the little electric carts at the grocery store and carrying a cane. Before we figured out it was happening, my primary care doctor sent me to a podiatrist for persistent scabby growth on my big toes, which the podiatrist treated as ingrown toenails. It's hard to say, that may have just been ingrown toenails (my father used to have problems with that, and my daughter has as well) or it may have been the result of the H-FS. During the seventh round Wendy asked to see the bottom of my feet and her reaction indicated that she had never seen it that severe. The only cure for H-FS is discontinuing the drug that caused it so she first delayed the eighth round and then decided to cancel it altogether.
I won't get into detail about the other major side effect, suffice it to say that for most of this period I was using a full roll of toilet paper every single day.
25 March 2014 — The chemo disaster
Although Manny and his team cut out the cancer they knew about, whenever there is metastasis the oncologists insist on followup with chemotherapy, radiotherapy, or both. In my case, both, starting with chemo, overseen by Dr Xiawen (Wendy) Wang. The plan for me was to have eight rounds of chemo starting with an infusion of oxaliplatin (pronounced ox-ally-plat-in) followed by two weeks of capecitabine (patent name: Xeloda, pronounced cape-CITE-uh-bean) orally. Whidbey's oncology services are centered on the MAC Clinic (medical ambulatory care) and their setup for infusions is pretty nice. A large circular room has eight wedges divided along an outside wall, each wedge has a chair for the patient that is almost a throne, a couple of comfortable chairs for family, a DVD player, and a decent-sized TV mounted on the wall, all directly accessible from a long nurses' station.
We didn't bring a movie but we had reading material and we settled in in mid afternoon to start the treatment. A nurse setup an IV drip, starting with a bag of D50 (50% dextrose solution) to maintain the catheter, then first one and then a second bag of anti-nausea meds, nausea being a central concern with most chemo agents, including both of the ones in my plan. (I also had at least three prescriptions for anti-nausea pills.) Then they hung the big bag of oxaliplatin which took about two hours, by which point most of the staff had left for the day. I noticed the infusion was finished and Larkin started packing up her things, assuming the nurse would be removing the catheter and sending us home. She looked over at me and saw that my eyes had rolled up in their sockets and I had a facial spasm. She yelled for the nurse, who took one look and put out an emergency page over the hospital's loudspeakers. Within minutes a crowd of people had arrived, accounts vary from a dozen to twenty, who ripped the sides off my throne and simply picked it up and carried me out of the MAC Clinic, down the hall, through the lobby, and into the ER. All very exciting, I'm told. The next thing I knew was that I was laying on my back and a total stranger was asking me what year it was and who was president. (I got one right, and I was only one off on the year.) A full-blown seizure was not expected, the staff had never encountered one before as it occurs in less than one in a thousand patients. Lucky me. We went home and I started taking my pills.
5-6 March 2014
Larkin had to be gone for a weekend so David Wendel came out to the island to keep tabs on me and drive me to Manny's office to remove the last tube, the Jackson-Pratt drain. This is nothing more than a single tube leading into the wound cavity, at the outside end of which is a fist-sized plastic grenade-shaped bulb. Squeeze the bulb and close the stopper and the shape of the bulb maintains a small suction on the tube. Uncap the bulb and you can extract and measure the amount of drainage. While still in ICU the volume was well over a 500 ccs per day. It was down to about 60 ccs per day when I got home, under 10 ccs by the time it was removed. A very slight tug to remove the sutures holding the drain tube in place and it slid right out. Manny seemed proud of his needlework and my progress at that point.
27 February 2014
The biggest obstacle to freedom at this point was the process of handling my urine output. First, a very old and clever system was used to immediately drain urine from the bladder without risk of falling out as I went about normal movement. It's a tube inside a tube, the end that goes into the bladder is surrounded by a water balloon that is inflated with 10 cc of saline solution from the far end so that it can't work it's way out.The other end connects to a swivel port where a variety of collection bags can be attached. In Dr Hu's office, the nurse deflated the water balloon and, on the count of three, the catheter was smoothly drawn out and discarded with almost no discomfort at all. The worst of it is the adhesive patch that held the swivel port to the inside of my leg. Saturating that with alcohol broke down most of the adhesive although I fear some of that will be with me for weeks. But it worked, Wikipedia has more on the Foley catheter.
24 February 2014
My daughter Amelia Neighbors took the day off (Nordstrom IT) and came to the hospital at ten. We had a nice chat, then she started the process of packing up all the accretia of my ten-day stay. Manny dropped by and removed all the tape covering the area around my incision (ouch!) and pulled out the staples. He was using a new kit for closing the incision and pronounced it worth the investment. Looking at the drainage in the "wound vacuum" he decided that we could dispense with that, one less bit of gear to drag around the house.
I didn't count them all, but there were a lot of tubes and wires connected to my tender bod a week ago. The discharge nurse removed the IV site from my wrist while I was reviewing paperwork, leaving only the catheter and "Foley bag" for urine and the Jackson-Pratt drain for the wound itself. Unlike the hospital, where everything was logged ("charted"), my only requirement is to measure and log the output from the J-P drain. When it's under 30 ml per day I can go in and have it removed.
Still very tired but happy to be in my recliner, although I must say that the omnipresent hand holds for getting in and out of various seating options will be missed until my belly is more fully recovered!
23 February 2014
"This is so unlike him!" cried Shirley Kaiser on WW-Talk, to not update this status page. Yes, it's true, Van rarely misses any opportunity to belabor the arcana of his world with no regard at all to the likely interest of his interlocutors. Okay, here's the truth: It's a real bitch trying to use a laptop when you're in a hospital bed!
Steady daily progress, including moving from ICU to "the floor" yesterday afternoon after seven days. More normal bodily functions taking place, some of which are taking place so often that they are becoming a real time sink, growing strength, continuing removal of various tubes, probes, and wires.
Current plan is to leave the hospital tomorrow (Monday, 24 February), following up with the urologist (Hu) about a week later. More detail later in the day.
16 February 2014
The cable collection is starting to letup. Yesterday afternoon they removed the catheter into my stomach. That one was removing any liquid accumulation there as the intestines apparently aren't ready to go back to work. And it seems we are just waiting for these wayward organs to decide to go back to work, there isn't a magic switch to get them fired up again. I'm told that gas is important, but it has to move out the lower end, my truly majestic burp a little while ago is not helpful.
That catheter was one of the most annoying elements here, it came out of my nose and did a pretty good job of blocking spoons, not that they were letting me spoon anything in other than small chips of ice! It was determined that I wasn't getting enough benefit from the nasal cannula I had been wearing to keep that in, although those are so light and so non-intrusive that I never really care. The once-per-hour totally-automatic blood pressure test was also scratched. The test cycle itself wasn't too bad, but definitely was a problem keeping the cuff in place.
I am sitting up on the side of my bed right now, pretty much exhausted by the effort of sitting up and writing this little bit. Pathetic, I know. I was able to stand up a few minutes ago without too much pain. My nurse is talking about combining all of my remaining monitoring and effluent-collecting devices so they can be moved together, i.e., that I can take a short walk. If not today, it will certainly be tomorrow.
15 February 2014
I've never been so connected in all my life, but I am in the ICU and appear to be alive. I'm told that they decided to take my appendix out while they were in the abdominal cavity, I'm not complaining about that. Alas, despite multiple IVs, drains, catheters, et cetera, I can't seem to get my laptop connected to power, so I have to get off here until I work through that. We'll try again tomorrow, but I seem to be in pretty good shape.
13 February 2014
Well, I can have one more snack before hitting the sack, then it's clear liquids for the day and another round of "prep". Surgery is bright and early tomorrow morning, then a day in ICU, then a week in the hospital. I'll try to update this page as soon as possible after the surgery, but that's not likely to happen until at least next Monday.
6 February 2014
Met with Manny yesterday afternoon. To start with, the surgery was rescheduled for next Friday so I'll be even less sensitive to the nuances of Valentine's Day than usual. He expects the surgery to take four to five hours and plans to go after both growths instead of just removing the larger one and later using radiation on the smaller one. He expects I'll be in the hospital for a week. An epidural is now part of the anesthesia plan, but the hospital wasn't equipped for it, apparently securing the supplies or equipment needed was part of the delay. He expects to remove about two feet of my colon. I'm not happy about the delay but I guess one more week isn't really significant in the grand scheme of things.
3 February 2014
Just hanging out waiting, seems to have been a recent theme. Tomorrow we see Manny again for a final consultation, or maybe it's a briefing. Knowing how verbose Manny and I can be, the staff scheduled this for his last appointment of the day. (He didn't know that, he was still on vacation in the Philippines at the time.) I'll come away from that with a better idea of what I'm in for on Friday, and I fully expect to be instructed to do the same prep that I did three weeks ago for the colonoscopy. The surgery, while "scheduled" for Friday, won't actually have a start time set until Thursday, not that I'm likely to care one way or another. I imagine general anesthesia tends to disrupt the sense of time anyway.
30 January 2014
Larkin and I went to the office of Dr Benjamin Hu, the urologist. He explained a little of the details of his part of the surgery, which is basically to separate the bladder from the colon, remove any suspect parts of the bladder, and patch it back up. He said that the operation could take anywhere from three to eight hours and that I would probably stay in the hospital for four days, possibly in ICU for the first of them.
24 January 2014
Back to Whidbey General, at a more sensible hour of the day, for a series of CAT scans using "contrast". Because of the intermittent fistula between my bladder and colon, they first filled my bladder with an iodine salt solution and did a pelvic scan. They handed me two bottles of barium sulfate emulsion with instructions to drink them over a period of two hours. This stuff is seriously nasty tasting, far worse than the dreaded colonoscopy prep. When the time was up, they put an IV lock in my arm with a little saline to test it, then ran another scan with the barium delineating my intestines. They dragged me a little way out of the machine and injected another iodine solution in my IV to light up the blood vessels and ran me back in for a final scan.
15 January 2014
Larkin and I were in Dr Manuel Lazano's office on the first business day of the year, having secured a solid Silver plan of the dreaded Obamacare on the Washington State health exchange. Manny scheduled a colonoscopy for the 10th, with the requisite "prep" for the previous 24 hours. If you've done this, you know; if you haven't done this, you don't want to know. But I was clean as a whistle inside when I reported to the hospital in what I'm assured was the early morning, but it was still pretty dark. The plan was to map out the diverticulae that had been causing me problems for so many months so that section of bowel could be removed.
The colonoscopy didn't go as planned, There was a mass observed in my rectum, a couple of polyps were spotted and removed, and then a larger mass blocked the way. Manny took tissue samples of both masses and the pathology report came back today. One was definitely malignant, the other was probable. Later in the day I asked Manny if he had actually found any diverticulae, he said that he had but only small ones that shouldn't have caused the issues I had last year. He promptly scheduled more scans.
The plan is to operate on the larger mass, which has apparently reached through the colon wall into the bladder, and to radiate the smaller one in my rectum. I wondered if I was going to need another colonoscopy shortly after the surgery had healed, Manny said I should plan on another one after a year.
28 October 2013
Despite the fact that I'm getting seriously tired of talking about my recent health problem, a lot of people seem to want the details. I decided I should share some of them, if only so you don't think it's even worse than it is.
At some point prior to June of this year I developed a condition known as diverticulosis. This happens when the pressure inside the colon meets a weak spot in the wall of the colon and forms a diverticulum, a sac outside the normal bounds. The diverticulae accumulate material in them, which can become infected or abscessed from time to time. An acute event is called diverticulitis.
My first glimmer of this came in June. Based on symptoms related by friends, I thought I was passing a kidney stone. My doctor diagnosed diverticulitis and changed my diet, which seemed to take care of it.
I had another event in August, don't even remember the details, but it involved a urinary tract infection on top of the diverticulitis and she (Dr Patrice O'Neill) put me on antibiotics (Cipro and Flagyl) for a week, which seemed to clear it up.
At the beginning of October I began to run a fever, the highest I can recall. We managed the fever with ibuprofen and I went on a clear liquid diet, then the doctor insisted I go to the ER on Friday to get some pictures. The ER had a better idea. Lots of blood work, a CT scan, and an IV to start with, and they admitted me to the hospital. Over the weekend they added a boatload of antibiotics to the IV, the same ones I had taken orally back in June.
On Saturday they took some X-rays, moved me to a "low residue" diet, and told me the critical item was that one of the diverticulae had met up with my bladder and there was a fistula connecting the two. That had some odd minor symptoms but essentially means a lifetime of urinary infections if not surgically corrected.
I went home with 12 days worth of my now-favorite antibiotics (rather a heavier dose than in June) which actually worked pretty well. While I had been in the hospital, and for the next three or four days, I rarely had an hour go by without a bowel movement, although the result was often about the size of a lima bean. That area became more than raw, I've been adding a lotion with topical anesthetic (Sensitive Sarna) to the toilet tissue, which works well. To my great relief, the antibiotics have gotten that down to a much more reasonable level of time in the bathroom.
The plan was to meet with the surgeon on the 24th. From what he said at the hospital, the next steps are a fistulagram (to investigate the flow through the fistula) and a colonoscopy to get a good idea of where all the kinks are. Based on that, either he will operate or refer me to someone more specialized. As I understand it, the plan is to resect the colon, i.e. remove a section of the colon where the problems are.
I don't have health insurance. All year we've been on pins and needles hoping that nothing expensive was going to happen before January. The uninsured price for a colonoscopy runs close to five grand while such a screening will be free under the Affordable Care Act.
Needless to say, a significant part of the meeting on Thursday was trying to figure out a way to delay everything until January, which is only about 70 days away. To our great relief, the surgeon felt that it was possible. Essentially, as the antibiotics were able to clear the problem up the last two times, he is confident that it will continue to work. However, he was clear that he would only do this one more time.
In the meantime, I'm feeling reasonably well although I don't have much energy. For better or worse, I don't have much work at the moment, other than catching up on paperwork so I can convince the hospital to drastically reduce the bill I just got, and to make sure that the final price of health insurance for 2014 is something we can actually pay.
Nietzsche said "What does not destroy me, makes me stronger", but this just seems like a completely unnecessary setback. Several family members made a generous gift that took care of this month's rent and groceries, which takes a lot of the pressure off, but general support and lots of good wishes from friends will definitely be appreciated.