MALIGNANT ASSHOLE

or

My experiences with rectal cancer



A diary




Due to limitations in my HTML editor of choice, this file was getting too big to manipulate, so I've split it up. Click here for the earlier part of the story.

Note that in the text below I will occasionally use complicated or technical words, and not explain what they mean. Feel free to look up their meanings, as I did.

Some of the information presented below may fall into the "too much information" category. Feel free to stop reading at any point.




Thursday 7 Jan 2010 -- Remember in September I got a bill from DC EMS for about $450 for the ambulance ride? (see above for details). At the time I sent in a check for the full amount. I also knew that my insurance company would be billed for the amount, and that they would pay the amount (minus a $100 co-pay). I sent in the check anyway, for two reasons -- (1) if I didn't pay DC EMS, and quickly, they could easily put this on my credit report as an unpaid debt, and I didn't want to go down that road, and (2) if you ever want to gum up a bureaucracy, pay for something *twice*, and (most important) don't complain. They aren't expecting that (they're used to people not paying), and when they find two payments for one item, investigations have to be launched to figure out what happened, etc. Today I got a refund check from DC EMS for about $350, the amount the insurance company paid for my ambulance ride. Tee hee.




Tuesday 12 Jan 2010, 8:30AM -- Status appointment with Dr. Perry

I shared my insights about the stricture pain. Both Stacey and Dr. Perry were impressed, and agreed that I was probably correct. They said that they had no problems with me having the urological procedures scheduled for the 22nd, but that any surgery (such as a urethroplasty) should wait until after the Irinotecan regimen is finished, and the Irinotecan fully flushed from my body.

Stacey said that I'd probably lose some more hair, and end up with wisps, but likely not the cueball look.

As for a letter to Dr. Bandi, Dr. Perry said he'd be happy to write such a letter. As for the length of time the letter will say that I have left to live, he said he'll put in whatever number I'd like for him to say. So I suggested "at least two years" and he said okay. Stacey said she'd send me a copy when the letter is sent.

Dr. Perry said in passing that he had an educated guess, based on his experience, as to what my life expectancy really is, and I was very careful to NOT react to that. All in all, I'd rather be surprised.




The following is extracted verbatim from Steven D. Levitt and Stephen J. Dubner, SuperFreakonomics [New York: HarperCollins, 2009], pp. 84-86. The authors do not directly mention colorectal cancers (such as mine), but colorectal cancers are solid tumors. Emphases as in the original.

     Most people want to fend off death no matter the cost. More than $40 billion is spent worldwide each year on cancer drugs. In the United States, they constitute the second-largest category of pharmaceutical sales, after heart drugs, and are growing twice as fast as the rest of the market. The bulk of this spending goes to chemotherapy, which is used in a variety of ways and has proven effective on some cancers, including leukemia, lymphoma, Hodgkin's disease, and testicular cancer, especially if these cancers are detected early.
     But in most other cases, chemotherapy is remarkably ineffective. An exhaustive analysis of cancer treatment in the United States and Australia showed that the five-year survival rate for all patients was about 63 percent but that chemotherapy contributed barely 2 percent to this result. There is a long list of cancers for which chemotherapy had zero discernible effect, including multiple myeloma, soft-tissue sarcoma, melanoma of the skin, and cancers of the pancreas, uterus, prostate, bladder, and kidney.
     Consider lung cancer, by far the most prevalent fatal cancer, killing more than 150,000 people a year in the United States. A typical chemotherapy regime for non-small-cell lung cancer costs more than $40,000 but helps extend a patient's life by an average of just two months. Thomas J. Smith, a highly regarded oncology researcher and clinician at Virginia Commonwealth University, examined a promising new chemotherapy treatment for metastasized breast cancer and found that each additional year of healthy life gained from it costs $360,000--if such a gain could actually be had. Unfortunately, it couldn't: the new treatment extended a patient's life by less than two months.
     Costs like these put a tremendous strain on the entire health-care system. Smith points out that cancer patients make up 20 percent of Medicare cases but consume 40 percent of the Medicare drug budget.
     Some oncologists argue that the benefits of chemotherapy aren't necessarily captured in the mortality data, and that while chemotherapy may not help nine out of ten patients, it may do wonders for the tenth. Still, considering its expense, its frequent lack of efficacy, and its toxicity--nearly 30 percent of the lung cancer patients on one protocol stopped treatment rather than live with its brutal side effects--why is chemotherapy so widely administered?
     The profit motive is certainly a factor. Doctors are, after all, human beings who respond to incentives. Oncologists are among the highest-paid doctors, their salaries increasing faster than any other specialists', and they typically derive more than half of their income from selling and administering chemotherapy drugs. Chemotherapy can also help oncologists inflate their survival-rate data. It may not seem all that valuable to give a late-stage victim of lung cancer an extra two months to live, but perhaps the patient was only expected to live four months anyway. On paper, this will look like an impressive feat: the doctor extended the patient's remaining life by 50 percent.
     Tom Smith doesn't discount either of these reasons, but he provides two more.
     It is tempting, he says, for oncologists to overstate--or perhaps over-believe in--the efficacy of chemotherapy. "If your slogan is 'We're winning the war on cancer,' that gets you press and charitable donations and money from Congress," he says. "If your slogan is 'We're still getting our butts kicked by cancer but not as bad as we used to,' thats a different sell. The reality is that for most people with solid tumors--brain, breast, prostate, lung--we aren't getting our butts kicked as badly, but we haven't made much progress."
     There's also the fact that oncologists are, once again, human beings who have to tell other human beings they are dying and that, sadly, there isn't much to be done about it. "Doctors like me find it incredibly hard to tell people the very bad news," Smith says, "and how ineffective our medicines sometimes are."
     If this task is so hard for doctors, surely it must also be hard for the politicians and insurance executives who subsidize the widespread use of chemotherapy. Despite the mountain of negative evidence, chemotherapy seems to afford cancer patients their last, best hope to nurse what Smith calls "the deep and abiding desire not to be dead." Still, it is easy to envision a point in the future, perhaps fifty years from now, when we collectively look back at the early twenty-first century's cutting-edge cancer treatments and say: We were giving our patients what?





Wednesday 20 Jan 2010, 8:00AM -- Ambulatory Infusion Center, third Irinotecan infusion

Monday's a holiday, so they pushed it back a couple of days.

Before they let me go in for the infusion, they took my blood and waited for the test results. I didn't ask what they were looking for, but I apparently passed, as they sent me back for infusion at about 9:45AM. Other than that, the infusion was uneventful.

(As an aside, Stacey had mentioned that the solid and well-shaped turds I have been experiencing after the Irinotecan infusions are actually caused by the constipating effects of the atropine. Nice to know.)




Since the upcoming urological procedures are supposed to make any further ISC (intermittent self-catheterization) unnecessary, I thought I'd add a few more catheterization observations here.

First, the urethra is not designed to have objects inserted into it. Because of this, any urethral catheterization, whether ISC or indwelling (e.g., Foley), requires the device to be thoroughly coated with a liberal application of lubricant. However, if the reason for the ISC is to keep a patent path through a stricture (as in my case), then the catheter occasionally needs to be jammed through the stricture. At times like this, it's hard to get an effective purchase on the greased-up catheter.

One reason to discard catheters more frequently is that after too many instances of bending, both in resistance to strictures and with the natural bend in the male urethra, the catheter loses some of its rigidity and becomes a little too flexible. Replacing it with a new one can help, but of course it's a trade-off.

And lastly (I hope!), you gentlemen will know what I mean when I refer to "shrinkage". The usual causes of it are cold temperatures or you find that she's a lot less attractive than you had hoped. Well, there appears to be another cause, and that is ISC. In fact, if I had a fanciful nature, I might refer to the phenomenon as "reluctance to be involved"     :)




Friday 22 Jan 2010, 12:10PM -- Procedure for cystoscopy and placement of the suprapubic tube, Dr. Bandi

At 10:10AM, I'm supposed to be at the Admissions Department at Sibley Hospital (*not* Georgetown). If you're confused, well, join the club.

My "Rabbi" (see above) picked me up at about 8:30 AM, so we were a bit early when we got to Sibley. About 11:30AM the Recovery Coordinator arrived, and both of them kept me company until I was wheeled away. I don't know if this is true for other people as well, but each time I'm put under anesthesia, I have no sense of transition from when I am awake before to when I am awake after -- it's kind of just "pop" and I'm in a different location and in a different posture.

Dr. Bandi performed both procedures on me, and though they're related they're technically distinct from each other, so I'll discuss them separately.

It turns out I didn't fully understand what happens when a suprapubic tube is installed. Yes, there's a hole punched through the abdominal wall into the bladder, and yes a tube is installed, but what's placed into the tube is a Foley catheter. It's not the same as a Foley catheter installed through the urethra (the "Foley" part refers to the fact that it contains an inflatable balloon which keeps it in place in the bladder). The part of this suprapubic Foley catheter outside the body is a plastic tube about eight inches long, and strapped down by an elastic band to the upper thigh of a designated leg (for the time being, my left leg). From there, the tube ends in a standard urological connection, and any urine collection system can be connected to it. The system they provide at Sibley is one of those crappy mid-leg bags that I hate, but they gave me one of those huge overnight urine collection bags, and two prescriptions -- one for the shin-located collection system I prefer, and the other for plugs. I want to try those out -- no collection bag. Hmmm.

As for the cystoscopy, Dr. Bandi described to my "Rabbi" and to the Recovery Coordinator what he found. She took notes (I was still unconscious then), on which I've based the rest of this paragraph. Dr. Bandi didn't like the way my stricture looked, so he took a biopsy sample from it. I suppose I'll get a report soon. He could not get the cystoscope to go all the way through to the bladder without, as he said, "tearing him open". He didn't want to do that because it wouldn't be productive. (As an aside, the cystoscope is narrower in gauge than the catheter I've been using, and yet for my catheterization to work I had to ram the catheter through that area each time, several times a day. Hmm. No wonder there was always blood and pain when I catheterized myself, and occasionally chunks of bloody tissue that came out on the catheter.) He said the stricture was smaller in size than he had expected. At some point in the next few weeks I am to get a "retrograde cystogram", where they squirt a radio-opaque dye through the suprapubic tube into the bladder and downstream into the urethra, as well as squirting the same radio-opaque dye through the penis upstream into the urethra, and take pictures. After that, I'm to see Dr. Bandi, and that should be about six weeks from now. The best news, though -- no more ISC. Yay!!!

By the time I woke up from the anesthesia, my "Rabbi" had left. There was some delay before they let me out of the step-down ICU (my blood pressure was too low), so I didn't see the Recovery Coordinator until about 3:30 PM. By then I had discovered that the exit point of the suprapubic tube, and the location where Dr. Bandi had punched the hole in my abdomen, was along my Dunlap, as I have Dunlap condition (you know what that means -- "his belly done lap over his belt"). This means I can't actually see the exit point except in a mirror. Not that I could see anything now, as it's covered by a dressing.

When it came time to leave the hospital, there was some confusion, as the nurse who was dealing with me couldn't find my discharge instructions or the prescriptions for me. After an hour or so, the nurse figured out that she had both my papers and the papers for the guy in the next bed over in her hand when the nursing supervisor interrupted her, the nurse set down the papers, and then when she came back she gave all of them to the guy in the next bed over. I thought it was hilarious, the way the nurse and the nursing supervisor were going on and on about how sorry they were about violating my patient privacy (can you spell "HIPAA"?), but the important point (from my perspective) was how they were going to reconstruct my discharge instructions and (most important) my prescriptions. Thankfully the nurse had been thorough and had recorded the prescription information onto the discharge instructions and scanned them into the computer system, so regenerating the discharge instructions was easy, but the nurses couldn't rewrite the prescriptions (that's for MDs only) and all of the physicians who had dealt with me had gone home. After some more running around (all this time the Recovery Coordinator was sitting in her car twiddling her thumbs), the nursing supervisor found an MD in the emergency room who was willing to rewrite the prescriptions, so I was finally able to leave about 7:30PM.

As had been arranged previously, the Recovery Coordinator drove me to the Recovery Location, where I spent the night. Not very comfortably, because I woke up every hour or so from pain in my Dunlap. It's a good thing I did, because I think someone slipped me a diuretic during the procedure, and each time I woke up my mid-leg bag was completely full and had to be emptied. My legs, swollen from lymphedema (long story, not relevant here), were shrinking, and my mouth was parched, and this condition (the prodigious urinary output) lasted well into Saturday morning. In addition, they used Pyridium on me during the procedure (it relaxes the bladder, but it turns your urine bright orange, and is very disconcerting if you're not expecting it). If I had been less exhausted and in less pain when I arrived at the Recovery Location I might have switched out the mid-leg collection system for the huge overnight bag, but I didn't think about that until much later. As for my hoarseness and sore throat, I'll blame them on the anesthesiologist, who said she'd (probably) stick a breathing tube down my throat.

Once again I am grateful for the generosity and support of the Recovery Coordinator (and her cook).

Because I was still feeling flimsy on Saturday morning, we (the Recovery Coordinator and I) decided I'd stay at least one more day, so I spent Saturday night at the Recovery Location. This time just before bedtime I swapped out the mid-leg bag for the overnight bag (which has markings on it, for the convenience of nurses, etc., showing the volume of the contents). It's a good thing I did the swapout, as I went to sleep around 9PM and woke up at around 3:45AM to find the bag almost completely full -- over 2000 mL, or more than the volume of one of those large soda bottles, all pumped out of my kidneys in less than seven hours. I emptied that, went back to bed, and at about 6:30AM there was another 1400 mL in the bag. Almost 3.5 liters, or just under one gallon, in 9 1/2 hours. Wow.

One thing which was *not* included in my discharge instructions (when I finally got them) is what to do about the site of the suprapubic tube placement, and the dressing over it, etc. I guess I'll have to call Dr. Bandi on Monday.




Finally!

When I was unconscious for the procedure(s), one or more of the drugs they gave me was of the opiate family. Then their prescription was for Percocet, which is Oxycodone plus Tylenol. I blithely took them, then remembered that oral opiates have no effect on my pain. Sure enough, no pain relief, but the opiates did constipate me, so much that *nothing* went into my colostomy bag from Thursday on. I kept eating, fairly normally, and the pains in my belly showed that I was full. Finally, on Sunday night, something arrived. It was just gas, but at least it was something. The solids didn't start until about 3AM on Monday, and then kind of stopped. So some 72 plus hours of constipation. Sigh.




A Dr. Hooper (apparently the low man on the Georgetown urology totem pole) phoned to say that I should have received a prescription for a retrograde cystogram (or retrograde urethrogram, different names for the same procedure), and of course I hadn't. So I called back on Tuesday 26 Jan, and this time actually spoke with someone, who described what I should do about the incision site. As I had expected, she said to use a mirror to see the incision site (she hadn't heard the term "Dunlap condition", but she enjoyed it and promised to remember it). Most of her instructions were common-sensical enough, it's just that in the past I had never had to deal with a wound (as opposed to a cut or a scrape), and I didn't know which way to go. She also said they'd send a prescription for a retrograde urethrogram to my home address.




Wednesday 27 Jan 2010, 11:45AM -- Status appointment with Dr. Stahl, POB WHC

Uneventful.




One of the consequences of the procedure last Friday is a painful area inside my perineum. It's kind of hard to describe, but it feels like there's something solid in there. What it might be I have no way of determining, but it's very painful to walk or to sit on it. It's different from any pain I've ever experienced before.

So I called the Georgetown Urology folks to ask what to do, and I was surprised when Dr. Bandi came on the line. He wanted to share with me the results of the biopsy. What had been considered a "stricture" is in fact a "metastatic adenocarcinoma of colorectal origin". My conclusion (of course the biopsy couldn't confirm this) is that my original rectal cancer had metastasized to my urethra. This would account for the elevated CEA levels. Maybe what they have been seeing in the CAT scans of my lungs were just cysts.

This has several interesting consequences. First, whatever they've been using on me for chemotherapy has had *no* effect on my urethral metastasis. Also, my ramming a catheter through the metastasic stricture, four or five times a day, can't have been doing much good (at least in terms of keeping the metastasis contained).

I left Stacey a voicemail, explaining what I'd learned. I expect some fallout soon     :)




Saturday 30 January 2010

Recovery Coordinator here. I'm sorry that I have to address you at this time, but it's important to update you as this story continues.

Around 5:30 PM on 28 January, the Patient called. A friend and former co-worker, V2, was on the way over to pick him up to take him to the Emergency Room at Sibley (Why there, you ask? It is the hospital with the most current records and where the most recent treatment was done). Later that evening, another call, they were waiting for someone to do something at the hospital. I asked V2 to call me once there was a determination - to keep the patient or to send him home.

The patient has told me that he wants to give credit to V2 for going above and beyond the call of duty that night. They arrived at Sibley around 7 PM, and he was sent back fairly quickly to a bed. The hospital staff sent him for a chest x-ray & then hours later they sent him for an ultrasound of his perineum. The ultrasound tech and the MD agreed that the painful area was NOT an abcess - everything looked normal (but he didn't feel normal). Then they admitted him and put him in a double (room w/another patient). Apparently the other patient in the room complained of the Patient's snoring, and during the night - he remembers none of this - they moved the patient to a private suite.

At 1:14 AM, my cell phone rang. V2 informed me that the Patient had been admitted and was in pain - possible abcess and possible infection (result of the surgery?)

On Friday, the Patient called me and told me he was in a different room (the above snoring story explains why). He said they were going to do an MRI to determine the source of the pain. Well, the patient reported to me today that all day long, various committees of doctors and nurses came through and examined the patient. The painful area is still just as painful as it was. Yesterday afternoon another area of the perineum got painful, and this morning an even larger area of the perineum got even more painful. Various groups of doctors have been yammering on and on about giving him an MRI to see what is going on inside of him, and he's been waiting for them to do just that since about 10 AM Friday (it's now 1 PM Saturday)

Doctors today have talked about bringing in people who are "pain specialists" to look at him, but none of them have shown up yet. Maybe they are thinking "it's a weekend" and "it's snowing" but he is in pain, and they aren't looking at him yet.

The current 'guess' from the doctors is that some of the pain is "locally active cancer". Cancer in situ is usually painless. The Patient's rectal cancer itself did not hurt; breast cancer does not hurt in the breast; lung cancer does not hurt in the lung. But when cancer starts spreading, it can be very painful. The current guess is that all of the painful areas of the perineum are metastatic rectal cancer just going wild. Because of this, there is no real way to treat it because it'll just keep growing. Cut it out here and it will grow somewhere else. The only thing that can be done for the patient now is pain reduction. Those folks certainly seem to be taking their time about showing up, as are the MRI people. "Sigh" (comment from the Patient).

I'd like to insert a comment from last Friday's procedure. Prior to the "Procedure" the Patient was in a room being prepped. A nurse came in to insert the line for his IV. She straightened out his arm and as she wiped the area with alcohol, he said "OW" with a sharp inflection. She immediately stopped, and said "oh my". He then smiled and said, "Just practicing".

Also last weekend, when the Patient was recovering here at the Recovery Location, I walked into the dining room and saw him standing (sitting is painful), leaning over with his head in his hands. I asked, "what's wrong?" and he replied, "Nothing a .357 couldn't cure." I told him the only thing close to that that I have is an old Japanese pre-WWII pistol but it is rusted and likely wouldn't work.

The Patient called around 4 PM to report that, finally, he has had his MRI. But still no medical staff has come to discuss his pain and pain meds.




Sunday 31 January 2010

The Patient is still in the Hospital (Recovery Coordinator here). Dr. Pahira (Dr. Bandi's partner) came in to see the Patient, and reported that the "possible abcess" looks more like a hematoma instead. The patient was also told that the pain management people should be there today - they did not make it in to see him yesterday "because of the weather" (we got several inches of snow). There was conversation on the phone with hospital staff, however, and the patient was given a Fentanyl patch. As of 1 PM Sunday, he did not feel any difference.

Some time this afternoon, the patient asked a staff member if he was going to get any lunch. There was some scrambling and he was fed (several hours late). A nurse informed the patient that Dr Bandi was planning on seeing him on Monday, and it was not known if he wanted to "do" anything, so in preparation for that, he would not be allowed any food or drink after 12 midnight. Apparently someone mistook 12 midnight for 12 noon, hence, no lunch.

The pain management doctor finally came to see the Patient! He spent about five minutes, and while there insisted that the patient "describe" his pain ("sharp", "tearing", "dull ache", etc). The Patient reports that he cannot easily describe his pain in such a manner, he has no concept of the type of pain it is - just constant. And enough to (obviously) cripple him.




Monday 1 February 2010

So, this morning, the Patient had not eaten or drunk anything since 11:59 PM last night (he told me he would wake up and drink the last of his Cherry Coke then). He was grumpy and disagreeable and in considerable pain. Around 10 AM, he was told he was going to be taken off the "no food" list, as the doctor had nothing planned, and that food would be brought to him "right away". WELL, as of 11:40 AM, he still had not received his breakfast.

Dr Bandi reported that thay can see there's something going on but they don't know what that is. Dr Bandi wants the pain management group to get fully involved with the Patient and, for example, crank up his meds. Once the Patient's pain is under control, Dr Bandi will discharge the patient with instructions to follow up with Dr. Perry & the Oncology folks at WCI.

Lunch arrived, around 12:30 PM (Note: no breakfast was ever received)

The Patient did talk to the Pain Management people again this morning, and spent about 15 minutes with him. This time the same doctor came in, with another MD. Most of the conversation was the Patient describing the failures he has had, over the years, dealing with orally-administered narcotics, including the Fentanyl patches. They said they would cut an order to increase the dosage of the Fentanyl.

The Patient asked the Nurse about the increase in the Fentanyl; she said that the order from pain management was for an increase to 50. Since the patch he currently has on is a 50, they just ignored the order. The Patient asked the nurse to call the pain people and ask if they really wanted the patch to be 50, or if they want it to be larger than what he had. As of 7PM, the nurse has not returned.




Wednesday 3 February 2010

Recovery Coordinator reporting again. Typing this at the single suite/room of the Patient. Sometime yesterday, the Patient FINALLY was given a stronger amount of Fentanyl - 75. That apparently has not done much, so today they bumped it up to 100. The Patient reported to me that the nurse who applied the patch yesterday did not shave the skin prior to applying the Fentanyl patch, and that (not shaving) reduced the effectiveness of the medication. He pointed out to the nurse today and pracically had to insist that he be shaved prior to them applying the new patch. Now he is slightly more comfortable.

This afternoon, Dr McGeagh came in with a slew of Urologists. Only Dr McGeagh and the Patient spoke, one of the other doctors was taking copious notes. They discussed the very real likelihood that pain he has been feeling (which he and others thought and described above as phantom anus pain, the stricture, etc.) could have been the metastasized carcinoma. With that stricture not really being a stricture, the Patient noted to the doctor that it was quite likely that he (the Patient) would never urinate normally again. Dr. McGeagh agreed. The Patient then told the doctor that if is was necessary to go in and cut out everything "in his underwear zone", it is OK with him.




Friday 5 February 2010

Recovery Coordinator reporting. I tried to call to cancel/reschedule the Patient's appointment for Monday (Irinotecan infusion) but nobody answered the phone. I'll try again on Monday morning.

When I visited the Patient on Wednesday, he was sort-of laying, legs spread, hospital gown not totally keeping him covered, but he was decent. He informed me that there was a sheet or some such folded and shoved in place, keeping his scrotum in a raised position. That was the only comfortable sitting or lying position the Patient could find. While there, I had a pleasant conversation with his nurse, who complemented me on my gift-giving (the books, at Christmas). It seems to me that they will come in handy sooner, rather than later.

A CT scan was done yesterday, and it seems that everything "down there" is pretty messed up. Today the Urology folks were going to try and get the Radiology folks to drain a bunch of fluid from around his urethra. They stopped giving the Patient food/water mid-morning, in preparation for the procedure. Around 2:20 PM, the Patient called me to tell me that he had no hydration, not even IV, since mid morning, and that they had inserted a needle in around the base of his penis to drain the fluid. Fortunately, they gave him "happy juice" and he was awake for the whole procedure. Toward the end, they pushed a bit extra and he cried out in pain. But at least they got some pus out. (The original plan was to insert a drain for four to five days, but because there was so little pus, the drain was not needed.)

Of note, per the Patient, the CT machine talked to him! First it told him to hold his breath, and later told him to breathe. Of course, at first it was talking to him in Spanish and when he said "I don't understand Spanish" (IN SPANISH), the tech had to figure out how to change to English before proceeding.

A personal comment, if I may. This is very difficult for me. It is a joy to hear from the Patient's many friends, and it is somewhat cathartic to assist in the tracking of what is going on. But it is painful as well (emotionally, nothing like what the patient is going through).




Sunday 7 February 2010

DAMN IT IT SEEMS TO BE WINNING

The Patient's scrotum is swollen, seven inches by seven inches, skin is tight. They will be operating on Monday, when they can arrange for the surgery. In the morning they will do a CAT scan to 'see what they are doing' during the surgery. The patient has called several times today, and he sounds more and more tired. Like he is tired of the battle and ready to give up the fight.

DAMN IT




Monday 8 Feb 2010, 8:00AM -- Ambulatory Infusion Center, fourth Irinotecan infusion - this did not occur.




Tuesday 9 February 2010

Recovery Coordinator here again. Yesterday, the Rabbi visited the Patient at Sibley Hospital, so someone would be there to hear the surgeon's report after the latest "procedure". {Why do they call them procedures? they are surgeries!} Just before noon, the Patient called and sang, "they're coming to take me away, ..." Around 1:30, I got the follow up call from the Rabbi, reporting that the procedure was over, and that the surgeon had reported removing about 150 cc's of pus from the patient's groin area. In two to three days, the decision will be made about releasing him to go home; healing from this procedure will be by secondary intention (allow to drain on its own) - there was no sewing up their work.

Later in the day, the Patient called, reported that doctors had been in to see him, and he was told that yesterday (another CT scan had been done on Sunday) they had found evidence that the abscess was coalescing; they could see the abscess gathering together. If they had seen that on Saturday, a doctor told him, they would have drained it on Sunday. While it was not stated, it was implied to the Patient that some of the other pains could have been part of the perineum (and therefore, if the pain subsides, this procedure helped).

Monday night, a nurse changed the bandage on his wound around 11 PM - the Patient reports that it was "very painful". This morning, before 8 AM, a doctor came in to check the wound and also changed his bandage, stating that (even though the changing was also very painful), the wound "looks fantastic". If all is going well, the Patient could be sprung from the hospital by the end of the week. And no, Hospice is not the location, he would be coming to the Recovery Location for the duration of the need for dressing changes.

Because of the location of the wound, once again the Patient will have home health aides visiting. After the last recovery session, I and my Cook went out and bought a new mattress and box springs for the Recovery Bed. WELL, the Patient reported to me that part of the healing of this wound is that he will be oozing out on the bed. So I get to go out and purchase "bed pads" (disposable), also known by the home health aides as "chucks". What fun.

And now another comment. There is no way to fully thank a friend. The Rabbi went above and beyond the call of friendship in recent days, hanging out all day at the hospital yesterday and today going to the Patient's home to get 'stuff' he'll need later. And this through awful road conditions. It is a blessing for the Patient to have a friend like this.

And now, calling all other friends of the Patient - while he is residing at the Recovery Location, you are welcome to visit him! It is my hope to not have to hang out here all of the time, so I hope others can keep him company. PS He likes Cherry Coke (like we who know him didn't already know that).

As you can tell, Sunday was a rough day. Each time I spoke with the Patient, his strength seemed to be waning. Yesterday afternoon he sounded more like his old self. I am not hopeful of a miracle, but I do hope to have time to "get his affairs in order" and make certain I fully understand all of his wishes. And we will all get to enjoy the Patient and his wit a little while longer.




Saturday 13 Feb 2010

A friend called the patient long distance this week; she is a woman whose husband is a non-demonstrative type (NEVER shows emotion, even when his own mother died, he did not cry). Well, this friend asked if there was anything that could be done for the Patient and his metastatic cancer. He said that no, there was not. The husband (also on the phone call) started crying uncontrollably (which surprised the Patient, to be sure). The wife then said that if the Patient didn't get better they she would have to come (from out of town) and spank him. That got all three laughing, at which time the Patient said "this would be a good time to end this call." The husband agreed, and all hung up.

At one point this week, the Patient called for his nurse. She came in and said, Is there anything I can do for you? The Patient replied "a 357". She said, "do you mean a gun? All I have is a 9 millimeter." - The Patient was impressed with her quick retort.

On Wednesday, the Patient called to let me know that his IV antibiotics had been disconnected from his port. When that occurred, he got up and strolled down the hall. YEAH! PROGRESS!

On Thursday, the patient reported that he walked to the floor's lobby area and sat (yes, SAT) in a chair. It was a large cushioned chair, but he sat in it with relatively little pain. Compared to his recent utter agony of putting himself in any chair, this was great news.

The pus that had been drained on Monday was found to be an intracoccus bug. The Patient can report the details on that (as we are all sure he will). The patient felt better and was working towards getting out of the hospital. He told me that I could be contacted to discuss the discharge etc. Shortly after that call, the Patient called again, and passed the phone to "Irene", who started talking about home health care and how to contact the Patient at the Recovery Location. She mentioned trying to arrange a visit for "tomorrow" at which time I asked when the Patient is to be discharged. "Today" was her answer. WELL, the Cook and I were NOT prepared for that - and had no way to get to Sibley to pick the Patient up. I immediately pushed back. And the Patient had NOT been informed of this plan (or if he was, it was not clearly stated for him to comprehend). In fact, he heard her say "today" but did not know what it was in reference to. I had to tell him, later, that they were intending on sending him home.

A little later I received another call, from the discharge nurse. She was also pushing to release the Patient on Thursday. They obviously think that all we do is sit around waiting for an opportunity to drop everything (including our full time jobs), to change our schedules to accommodate theirs, with no communication until the last minute. To say the least, I was not happy. Again I pushed back. The biggest factor was that the Patient was not ready (emotionally, if not physically) to leave the hospital, and the Urology doctor concurred, allowing another day.

Friday, as it turned out, was the first day there was movement on local roads in several days. The area had been blanketed with two snowstorms in recent days, shutting down all traffic. The drive to Sibley was interesting. A lane would widen or narrow with no notice. I found myself driving over the yellow line once or twice, because that was where people had driven. A power line was laying on one street, a tree (with snow all around it) on another. Close to the DC line, traffic got horribly snarled. Finally I arrived at the hospital, the Patient was wheeled out, and we headed to the Recovery Location.

Once I got the Patient settled in, I went to get his drugs. One is the Fentanyl patch. It is my understanding that this is a "controlled" narcotic. I called two CVS stores to find the 100 patch. Dropping the Rx off, I returned later to gather it. A comment about CVS - the line to pick up prescriptions at 5 PM was eleven people long. The joy was calling the store from my cell phone while in line, and complaining about the long line. Unfortunately it did no good. They did not open a new line or move any faster. C'est la vie. When I got up to the front of the line, there was no asking for my ID. I was able to ask for the drug and get it. Hmmm.... who should I send to get some next time? The Cook was able to pick up a Dilaudid prescription when the Patient was here in '08. No ID ... different CVS, but it is interesting that at two different CVS pharmacies we were able to get a controlled substance without flashing an ID.

The Cook and I went shopping Friday evening, buying a flat screen TV (our first) and a digital antenna so the Patient can watch TV from his bed. As friends come over, I hope you will adjust the antenna so the Patient can watch Jerry Springer from the comfort of his bed. If not, he will have to watch Jerry from another (cable-attached) room. The Cook and I also purchased a new phone, so the Patient can have another line in the Recovery Room.

Last night, I asked the Patient what he wanted for breakfast - oatmeal, eggs, or toast; he replied "Yes". But this morning when served canteloupe, then eggs & toast, he could not eat very much. I hope this is just a sign of the Fentanyl and other drugs.

For you who are friends of the Patient, please feel free to call the Patient directly (he has his cell phone) or call the Recovery Location. Visits are encouraged (the front walk is clear of snow). Make the Patient walk around, especially make him walk down and up our stairs. Please. The sooner he heals the sooner he can ... um ... leave. I don't mean that in a bad way, but that as this 'wound' heals he will be able to get his own life back.

The Patient and I have been having a number of discussions (brief, but I keep bringing the subject up) of his "end of life" matters - the medical directive, power of attorney, will, etc. As difficult as these are, I have concluded that they are imperitive for all of us, even if we are in good health. Especially if, when we put these together, we are in good health. I also believe that somewhere we should have a listing (NOT on a computer, mind you) of accounts and access information. I do not know how I could have taken over all of the Patient's affairs had he continued on a downhill slide these past two weeks. Yes, not only am I the Recovery Coordinator, I am also the Executor. This is not a role I look forward to, but it is an honor to be asked to help to execute the wishes of the Patient. A friend of mine (who is also an acquaintance of the Patient) is assisting in putting the legal documents together. It is a herculean task, and one I thought would have to be sped up because of this recent setback. Fortunately, we have received a temporary reprieve. But I need to discuss these things more with the Patient, and it is my hope to get everything done and signed while he is here at the Recovery Location. {Oops, he'll read this and may get stubborn again and not move on this.}

The Patient and I discussed holding his wake while he is around to 'enjoy' it. But then, following some reflection, we decided not to. Someone may start crying, and the last thing the Patient wants or needs is to have a room full of maudlin people, crying over his impending demise. So we will wait and hold that later. You who know the Patient, please make certain I receive your contact information so when the time comes I can let you know where and when said Wake will occur. I hope we have lots of time to plan it.

It should now be time to hand the diary back to the Patient. But as his recovery continues here and down the road you will hear from me, from time to time. Those of you who know how to contact the Patient, please do so. He does like hearing from you. But please don't talk of your own sadness over his condition. Crack jokes, give him grief. Make him laugh. Recovery Coordinator, signing off for now.




This the patient (or the Patient) speaking again. I thought I was logorrheic on this webpage, but gosh. Nevertheless, I am completely grateful for the support of the Recovery Coordinator (and her Cook). I can't have made it this far without them.

The size of the wound in my perineum is 6.5 cm long, 1 cm wide, and 4 cm deep, except for a dip (located at about 1:00 when you look at my perineum from about my toes) which is 6.5 cm deep and surprisingly close to my left leg.

What the Recovery Coordinator refers to (above) as an intracoccus bug is actually an enterococcus bug, which is not good news (look up "enterococcus" and "nosocomial" some time).




The old friend (see above) wrote to say:

You are like the poster child for the theme from Friends: "Not your day, your week, your month, or even your year."

Somewhere there's a voodoo doll absently tossed into a drawer full of icepicks. That, or you really need to look into past-life therapy and figure out which gods you pissed off.





Wednesday 17 Feb 2010 -- I noticed nothing was coming out into my urine collection bag. I switched bags, and drank a couple of pints of water, but still nothing came out. That told me that the Foley catheter, the part from my bladder to the outside world, was clogged. The recording at Dr. Bandi's office said that for genuine medical emergencies (which this was), I was to call 911, so I did. The ambulance folks took me to Shady Grove Adventist Hospital, where I had never been, and which had no records for me, so I had to recite alllllll of the above, from memory, for their benefit. Sigh. Nevertheless, they did flush out my Foley catheter, and got a urine return, so the immediate problem was resolved. The Recovery Coordinator picked me up that evening and returned me to the Recovery Location.

Later that evening, my abdominal discomfort, which I had ascribed to an over-full bladder, resolved itself into recovering from a near-fatal case of constipation -- my colostomy bag would fill up to the brim, so I'd trudge off to the Recovery Location Crapper (dragging along my urine collection bag), empty the colostomy bag, trudge back to the Recovery Location Bed, by which time the colostomy bag would be full again, so rinse lather and repeat. I lost count after about a dozen iterations of this. Sigh.




Sunday 21 Feb 2010 -- As of today, the size of the wound in my perineum is 4.0 cm long, 2.5 cm wide, and between 1.5 cm and 2.5 cm deep. So things are moving in the right direction there.

The biggest cross I have to bear at this time (other than dependency and enforced inactivity) is that the Foley catheter drainage of urine out of my bladder is inconsistant, but the sensation that my bladder is full and that I need to urinate right now is not. One of the visiting nurses explained how I could jiggle the tube where it comes out of my body (in my Dunlap), because sometimes the intake port in the Foley is not well-situated in the bladder (i.e., resting against the inside wall of the bladder), and doing that does occasionally provide some relief, but it still happens too often for my tastes.




Monday 22 Feb 2010 -- It happened about every ten minutes or so last night, so I got no sleep. The visiting nurse (after changing my dressing) tried irrigating the Foley catheter, and got nowhere. So I phoned the "Rabbi" (see above) and asked him if he could take me to the emergency room at Sibley. He said he could, and he did.

When we got there, I was in really bad shape, but I used the right code words to the admin people at the triage station(s), and got to see an ER doctor very quickly (the fact that I was just about the only ER patient at the time no doubt helped). I was placed on my back on a bed, the ER doctor deflated the balloon in my Foley catheter (the thing which was keeping it in place), and as soon as he did, whooosh! A geyser of urine came out of the suprapubic tube, kind of like what parents sometimes have to go through when changing the diaper on a baby boy. Instantly I felt about 1000% better.

The doctor took out the old catheter, inserted a new catheter, already hooked up to a collection bag, and then inflated the balloon in the new catheter. Within about five minutes there was about a liter and a half of urine in the collection bag. Whew.

Shortly after the Rabbi dropped me back at the Recovery Location, Stacey called to set up:




Tuesday 23 Feb 2010, 11AM -- Status appointment with Dr. Perry

Most of the time was spent with Stacey asking me what Dr. Bandi did. I answered as best I could. She said that a radiologist would not have been able to pick up the type of metastasis I had (into the urethra) unless and until it created a huge tumor. I don't know if I believe that (if it's true then why bother doing the CAT scans and MRIs in the first place?), but there it is. She came up with a list of things she wanted me to obtain from Dr. Bandi.




Sunday 28 Feb 2010 -- As of today, the size of the wound in my perineum is 2.5 cm long, 1.5 cm wide, and between 1.0 cm and 2.0 cm deep. So things are continuing to move in the right direction there.




Some random thoughts:

With the externalization of my urinary system, and the operation of the collection systems, I've learned a lot, much more than I ever wanted to know, about fluid dynamics.




Roger Ebert, the film critic, after many surgeries for cancer and to repair complications from the surgeries, has said the following with respect to his death one day:

I know it is coming, and I do not fear it, because I believe there is nothing on the other side of death to fear. I hope to be spared as much pain as possible on the approach path. I was perfectly content before I was born, and I think of death as the same state. What I am grateful for is the gift of intelligence, and for life, love, wonder, and laughter. You can't say it wasn't interesting. My lifetime's memories are what I have brought home from the trip. I will require them for eternity no more than that little souvenir of the Eiffel Tower I brought home from Paris.





Monday 8 March 2010, 11:15AM -- Followup appointment with Dr. Bandi, 4th floor, Pasquerilla Healthcare Center, Georgetown University Hospital

Dr. Bandi inspected my wound, and said it would probably be fully healed in two weeks, but that the visiting nurses would be the ones who would make that determination. This means that I would remain at the Recovery Location for those two weeks, until the nurses say I'm healed.

Dr. Bandi also said that arrangements would be made (presumably by his office, but he didn't state that explicitly) to have home health care nurses come to visit me at my home, every four weeks or so, to replace my catheter. Presumably this would start after I go home (i.e., after I leave the Recovery Location).




Wednesday 10 March 2010, 11AM -- Status appointment with Dr. Perry

Cancelled by me.




I'm currently lying here at the Recovery Location feeling very morose. On a certain recent day, four different friends/acquaintances had said they were willing and eager to pay me a visit. The day comes, and two of them called to cancel, and the other two just didn't show up, meaning that the only other persons I saw at all that day were the visiting nurse, the Recovery Coordinator, and her cook.

Don't get me wrong: I'm pathetically grateful for any and all human contact, and I know that, unlike me at this point, everyone else has a life. I also know that my condition sucks, but I don't know who it sucks worse for, me or those around me. It's one thing to know, as I do, that I won't live long enough to collect Social Security, and it's something completely different to interact with someone in that position. I know I'm one of the first persons in my circle of friends and acquaintances to be in my position (i.e., dying), and from what most of my friends and acquaintances have said, in passing, most of them have not had to deal with someone dying, other than elderly relatives such as grandparents, etc.

So perhaps this (minimum or no interaction with the decedent-to-be) is what I have to get used to, which means that, in the future, when I move into hospice (whenever that might be), I'll be even lonelier than I am now. Then again, perhaps I'm self-centeredly misinterpreting what actually happened -- the television news reports, and reports from one or two persons who actually have been in touch, say that the weather recently has been wonderful, the beginning of Spring, and everyone has been recharging their own batteries. I certainly hope that's the case, and the visits will resume, but I know I have no control over that. Sigh.




In response to the above, the old friend (see above) wrote to say:

So, how's that whiney thing working out for you??

Some random thoughts (my specialty!) before I go take my nap.

One of my clients just decided that a document I shouldn't have had to worry about until June is now past due.

Those of us who haven't learned our life expectancy can't decide which balls we don't need to juggle anymore. We need to behave as though we will need to continue providing food and shelter for our families for the next couple of decades.

Don't confuse the long silences with lack of concern, or we will start telling you just how much your situation affects our lives, and how unbelievably you will be missed.

You just blew a chance to put your point across much more effectively by playing the sage and advising us to look at our own, current situations objectively, so that we can look back on them, years from now, when we are -- as we will be -- in your situation, and, remembering what it was like, be more understanding of the people who aren't able to come visit us.

You won't be nearly as lonely in the hospice, because there will be other people around! Of course, they'll all be whiney little -- you know, it's amazing how much of our vocabulary orbits the seventh planet -- farts, but hey.





One of those self-absorbed celebrities, Sean Penn, said, in early March 2010, that critics cynical about celebrity do-gooderism should "die screaming of rectal cancer."

Okay, I'm doing that. Any other suggestions?




Tuesday 23 March 2010 -- I'm still at the Recovery Location, and today the home health care nurse made two changes. The first was that she swapped out the old suprapubic catheter and replaced it with a new one. The other is that I went from having the dressing on my wound changed daily to having it changed every other day.

The reason for the change in frequency of dressing change is that the nurses started using something called "Silvasorb" on my wound. Because of the way Silvasorb works, it's more effective if it remains in contact with the wound for 48 hours rather than 24 hours. My wound is now too shallow to put any packing into it.

The biggest problem with these two changes is that they had to be explicitly "ordered" by the physician, Dr. Bandi, before the home health care nurses were able to implement them. And the home health care nurses had been calling Dr. Bandi's office for the better part of a week, trying to get these orders issued.

I don't understand: why has every urologist I've dealt with been such a butthead? Is it something about the urology field? Or is this something which is endemic across the entire medical profession, and I just didn't notice it until having to deal with urologists? Thankfully my oncologists and my colorectal surgeons don't appear to be affected by this condition, at least not as thoroughly as the urologists.




Friday 26 March 2010 -- A relative scheduled a visit, at the Recovery Location, from a spokeswoman, sort of, of a local hospice service. The purpose of the meeting was to give me a better understanding of what hospice is all about. The main thing, at this point, is that hospice cannot become involved with the patient until after the patient has a letter from his doctor stating that, in the doctor's opinion, the patient has less than six months to live. I'm not at that stage, at least not yet.

Another thing which has to be in place before the patient can enter hospice is that the patient has to have already stopped all treatment for the condition which has led him to hospice. For example, hospice and chemotherapy don't mix. Some folks might consider this "giving up", hospice prefers to use the phrase "letting go".




On the morning of Monday 29 March 2010, I woke up to find that there was blood in my urine. I called Dr. Bandi's office, and called, and called, and it took some 7-8 hours for someone to call me back with guidance as to what to do. See above about buttheads.

What they said to do was to come in the next day, Tuesday 30 March 2010 at 1:45 PM, to see Dr. Bandi. I told them that that probably wouldn't work, because in addition to blood in my urine there were also blood clots, and I said it would be likely that these clots would block my catheter. They said that if that happened I was to go to the ER.

Through the night and into the next day, the catheter would become clogged for a few hours, and then free for a few hours (still with blood in the output), then clog, then free, etc. Finally about 6AM on Tuesday it clogged for good. I thought I could hold out until my appointment with Dr. Bandi, but I couldn't, and at 12Noon the Recovery Coordinator took me to the Sibley emergency room. The physician who worked on me there was the same one who dealt with the geyser (see above), so he knew what he was up against. Due to his preparation, there wasn't much geysering (though there was some), and I ended up with a new catheter.




Wednesday 31 March 2010 -- The home health care nurse who came today to work on my wound said that it wasn't there. The wound had healed so completely that there wasn't even a scab, just a scar. This means that I won't need the home health care services any more (except for changing the Foley catheter about once a month), and that I'm free to leave the Recovery Location and go home. Whew.

Once again, I am completely and gratefully indebted to the Recovery Coordinator (and her cook). I couldn't have done this without them and their help.




Saturday 3 April 2010 -- I move most of my stuff, and me, to my home. Yay!




Tuesday 6 April 2010, 11:30AM -- Status appointment with Dr. Perry

Stacey congratulated me on healing so thoroughly, but she was concerned about the process which caused the infection which led to the surgery. Because it occurred just after urinary tract surgery, I had always thought that it had been a consequence of the surgery, but Stacey pointed out that there was no communication path between the urinary tract and the infection site. She thinks that the infection is another sequelae of my metastatic rectal cancer.

According to both her and Dr. Perry, the current state of my disease is "advanced cancer". The various types of chemotherapy they've given me have had no real effect (if they had, then the stricture-which-was-really-a-metastasis wouldn't have been there), and the logical next step in their chemotherapy arsenal won't work on me, as I have the mutant form of kras, not the wild form (see above). Metastatic rectal cancer is not a curable condition, so a regimen of keeping me comfortable (pain management, etc.) and continued monitoring (CT, PET, MRI, blood work, etc., as appropriate) is what they were hinting at, and then Dr. Perry asked me for my input. I said that I had already been thinking along those lines, so that's what we'll do.

Because my only reason for seeing a urologist at Georgetown was for a urethroplasty, and because a urethroplasty ain't happening for me, there's no particular reason for me to keep seeing Dr. Bandi. I told Stacey that I wouldn't work with Dr. Hwang, becauase he had already lied to me about urethroplasties, but that I'd be willing to see any other urologist at WHC. She made an appointment for me for Friday with a Dr. Verghese, a urologist at WHC.

Stacey gave me a prescription for a pain drug, and told me to start keeping a pain diary. Unfortunately the three pharmacies closest to my home didn't have the drug in stock (they could reorder it and it would arrive early next week), or didn't stock that specific drug at all. Sigh. The first entries in my pain diary (which is not and will not be included here) are pretty sparse for just that reason.




Friday 9 April 2010, 9:30AM -- Appointment with Dr. Mohan Verghese, Urology Oncology, 1st Floor, Room C1148, WHC (202-877-3968)

I describe my various urological concerns. Dr Verghese says that my case had already been brought up for discussion (he didn't say when or who with), so he knew much of my history already. He advised a restrained approach, i.e., no interventions unless necessary. He said that my pains should be approached, and controlled, by the pain management folks.

Meantime I found a pharmacy which carried the specific drug at the specific dose prescribed by Stacey, so I got the prescription filled, and away we go.




Tuesday 13 April 2010, 8:30AM -- CT Scan, Main Radiology office, Washington Hospital Center

As I think I have said before, barium contrast medium = yuck.

The actual scanning was uneventful.




Tuesday 13 April 2010, 12Noon -- Dr. Lee Ann Rhodes, Pain Management Specialist, 202-877-3442

Before I can describe what happened, I have to make a digression which would appear to be irrelevant and orthogonal.

Back in June 2008, I had an abdominal-perineal resection with proctectomy. A few weeks later, I had a very odd sensation. I was feeling like my rectum was full and that I needed to go to the bathroom and defecate. I knew that this was impossible, because my rectum had been removed in its entirety, so there was no way I could have had that sensation, yet I was. Then a few minutes later, a big bloop of material ended up in my colostomy bag.

Over the next couple of weeks, the same sensation occasionally occurred, followed by a dump into my bag. I finally figured out what was happening, that there was some sensory nerve somewhere in my abdomen, most likely somewhere along the lower part of my colon, which could sense when a bolus was coming through headed towards my rectum, and report this to my brain. My brain bundled this sensation along with the reports from the rectum itself, and used all of them together to come up with a "time to dump" message. When the rectum was removed, all of the reports from the rectum disappeared, but this other signal didn't. It still, to this day, can signal me something's coming, and it *still*, to this day, feels to me like my rectum is full and needs a defecation.

My point, the reason for bringing this up, is that at that level, the sensory-reporting level, your brain is not always as smart as you would like it to be. Your brain maintains an image of your body, and incoming signals on the sensory nerves are interpreted based on that image. This is what makes the "phantom limb pain" phenomenon of amputees possible -- if a signal comes in on a particular sensory nerve pathway, the brain "knows" that it had to have come from the corresponding part of the body, and reacts accordingly. Even if the signal is actually generated by chemical irritation of the nerve, and not by the (missing) body part, the brain doesn't (and can't) make a differentiation.

Dr. Rhodes diagnosed my current condition, the pains I'm having throughout my underwear zone, as "visceral-perineal pain syndrome", which actually doesn't mean much -- it's just a description of my symptoms. She believes that my pain (which I've had pretty constantly and in varying degrees since the surgery in June 2008) is a consequence of the physical damage to the sensory nerves which occured during the surgery -- being severed, etc. My brain is thus misinterpreting the signals it's getting on those damaged nerve pathways as pain in the corresponding site.

She prescribed some Dilaudid for me, so we'll see what that does.




Tuesday 20 April 2010, 9:30AM -- Status appointment with Dr. Perry

Stacey said that she could turn me over to hospice, or that, if I wanted, I could be included in a clinical trial which was open now but which would be closing soon. The trial is testing a combination of two chemotherapy drugs, Ixabepilone and Dasatinib, in patients with solid tumors. Dasatinib has previously been approved to work on leukemia and is administered by a pill taken orally once a day, and Ixabepilone has been approved to work on breast cancer and is administered once every three weeks intravenously. The trial, led by a Dr. Sandra Swain and given the code name "MRI-GU IRB#:2007-528", has up to 36 participants, and is designed to test what happens when both of those drugs are used together, something which has never been done on humans. The local (i.e., WCI) contact is Jake Patterson, the same person who was doing the hedghog antagonist trial (see above).

Oh, goody, I get to be a guinea pig. It may not be of any help to me, but it may benefit others. Oh, well, why not.




Tuesday 20 April 2010, 12:30PM -- Dr. Lee Ann Rhodes, Pain Management Specialist, Oncology Specialty Center, WCI Room C1148

She prescribed morphine and Sertraline (Zoloft).




Tuesday 27 April 2010, 11:30AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151

My guinea pigging started today. After some blood tests (to get a baseline for later comparisons), I went back to the infusion center, and was infused with (I think it was) 86 mg of Ixabepilone piggybacked onto a huge bag of sodium chloride. Jake stopped by, handed me two bottles of Dasatinib pills and a diary form, and told me to take two 50 mg tablets once a day.

Because the Ixabepilone infusion was very slow, I didn't get out of there until 6PM.




Wednesday 28 April 2010 -- Took the first dose of Dasatinib at 6:30AM.

Because of the morphine I was taking, I was very constipated, so before going to sleep I drank a huge dose of Senna extract.




Thursday 29 April 2010 -- Took the second dose of Dasatinib at 6:05AM.

A friend came over in the morning, and we were supposed to go out, do some shopping, run some errands, whatever, but I didn't want to leave until after the Senna had done its thing. The dose I had taken the night before should have been enough to give a moose the runs, but nothing was happening. So I lay around in my La-Z-Boy recliner waiting and waiting and waiting. My friend left around 2PM to run some of her own errands, and I stayed, feeling more and more miserable. All of a sudden, at about 3:30PM, I vomited. It took me by surprise, but I managed to keep it in my mouth and run (well, hobble, with one hand carrying my urine collection bag) to the bathroom and complete the vomiting into the tub. About five retches, another two minutes of panting and hoping it was finished, and I cleaned off and hobbled back to my La-Z-Boy.

I phoned Jake and told him what happened. He said he'd talk to Dr. Perry. Dr. Perry phoned me back, and suggested I take some more of the Zofran anti-nausea tablets that Stacey had given me a prescription for on Tuesday. I explained, sheepishly, that while I had been *given* the prescription for Zofran I had not *filled* it, because I had never had a problem with nausea in relation to chemotherapy. So I had to get dressed, and, feeling more and more miserable every minute, trudge to the nearest pharmacy and get the prescription filled. Mission accomplished, I trudged back home and collapsed into my La-Z-Boy.

This time I took precautions, and stationed a plastic trash bag near me in case I needed it. I took the Zofran pill and tried to settle down, feeling more and more miserable every minute. Several hours passed, with me feeling more and more miserable every minute, until 11:15PM, when I vomited again. About a dozen retches this time. The second-most surprising thing about this episode was the volume of vomitus this time, as I hadn't had anything to eat or drink since the afternoon episode (except for the Zofran pill), and I had thought I had been emptied out then. I didn't discover the most surprising thing about this episode until I went to the bathroom to clean up, and that was that while I was vomiting I was also filling up my colostomy bag, almost (but not quite) to the point where the bag would fail. So I was exploding in all directions.

When I got back to my La-Z-Boy, I phoned the "On-call Oncology Fellow" who called back and said that if I could hold out until the morning, and deal with it then, that would be the best for me, but that if I couldn't hold out I was to go to the WHC emergency room. I slept fitfully until the morning of




Friday 30 April 2010, when a different friend came over. She brought me some breakfast, but I was too apprehensive to eat or drink anything. Starting around 8AM I called various numbers at WCI every 20 minutes or so to ask what I should do, but I kept getting answering machines. I left messages, but nobody called me back. Finally around 11AM I got through to Jake, and told him what had happened, and that I was feeling worse, and weaker, than I had yesterday. Dr. Perry then called back, and said that I should come in to the infusion center to be rehydrated. Since my urine, at that time, was a pretty dark color, and I probably hadn't kept down anything I had eaten or drunk for the past day and a half, dehydration was a pretty good guess. My friend and I then left, she flagged down a taxi for me, which I took to WCI.

I arrived there a little after Noon, and went to the infusion center. The folks there left me in the waiting room for *over an hour*, waiting for paperwork to come through, while I was feeling more and more miserable every minute, and it was only through the intercession of Jake, who was passing through, that the paperwork logjam was broken. I told Jake that while I'd like to help, if there's even the slightest possibility that my volunteering to help would make me feel like I was feeling at that moment, to include me out, that I was dropping out of the trial, and that I'd return the unused Dasatinib (and the diary) on Wednesday (see below). He was dismayed at my decision, but accepted it.

Once I got back to the infusion center, the nurse hooked a big bag of sodium chloride to my mediport, and started pumping it in. After a while, Dr. Perry came by and had the nurses add a dose of IV Dilaudid. I also told him of my decision to withdraw from the study because of the awful side-effects. He, too, was dismayed at my decision, but also accepted it. He also suggested that, since I live alone, I be admitted to the hospital overnight just to make sure everything inside me had gotten back to normal (for certain values of "normal"). I agreed, so a nurse wheeled me up to a room in the 3NW section.

At dinnertime, they brought me a dinner tray, I ate (almost) everything on it, and I didn't throw anything up. Also, my personality (i.e., being a smartass) had returned.




Saturday 1 May 2010 -- They brought me breakfast, I ate (almost) everything, and didn't throw up. The attending physician (whose name I didn't catch) pronounced me cured, and (because they asked what other medications I was on and I mentioned Dr. Rhodes and that the morphine she had prescribed wasn't working) gave me an additional prescription for a different flavor (if you will) of morphine. Apparently the version prescribed by Dr. Rhodes is a slow- and steady-release version which is intended to set up a continuous level of morphine in my system, and this other version is a more immediately effective dose of morphine.

They released me around Noon, and my friend (the one who had visited me on Thursday, not the one who had visited me on Friday) picked me up and took me home. I tried to get the new morphine prescription filled, but a half a dozen different pharmacies didn't have carry that version, and didn't know of a pharmacy which did. We finally found one out in Bethesda, managed to get there before closing time (Saturday hours), and got the prescription filled. It's a brown liquid, and I'm supposed to take one teaspoon every four hours.

We went to a restaurant for dinner, and during the hour or so between getting the prescription and getting to the restaurant, I drank about four teaspoons of the morphine. During dinner I was wired, woozy, shaking, scratching, and yet the pain in my butt-crack, the one which makes it hard for me to sit down or to get in and out of cars, was not diminished by one iota. Some other pains were reduced (or eliminated), but not the one which most directly affects my "quality of life". As I believe I've said before, sigh.




Tuesday 4 May 2010, 12:15PM -- Dr. Lee Ann Rhodes, Pain Management Specialist, Oncology Specialty Center, WCI Room C1148

Because of the failures of the opiates in lessening my pain, Dr. Rhodes suggested performing a nerve block, sort of like an epidural. While I would remain conscious, she would access the ganglion impar, right near my coccyx, and inject a local anasthetic. If that worked (i.e., if my pain was lessened or eliminated), then she would inject alcohol, to ablate the ganglion impar. This wouldn't be permanent, it would last for six months or so and then the ganglion impar (or at least its function) would grow back, but if it worked then I would be pain-free for those six months.

If that didn't work, then the next step would be either injecting an anasthetic directly into the spinal cord, or administration of steroids.

She also had me triple my dose of Zoloft.




Wednesday 5 May 2010, 9:15AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151

I described the events of last week (vomiting, overnight observation, etc.) in great detail to Stacey, and she said that it was most likely that the cause of the vomiting was *not* the trial drugs, but the peristalsis-deadening effects of the morphine. The part that convinced me she was right was that the vomiting didn't happen until some 48 hours after the administration of the Ixabepilone. If it was responsible, it's much more likely to have occurred much closer in time to the infusion. So I agreed to go back on the trial, but that if there was a repeat performance (shall we say), I was through.

In the meantime, there was still the question of what to do about my paralyzed peristalsis -- in effect, I was having another ileus. So Dr. Perry prescribed Relistor. It's indicated for the treatment of opioid-induced constipation in patients with advanced illness. Relistor is administered by subcutaneous injection, and an hour after the injection *WHOOSH*, the patient poops.

Because I hadn't shat for three or so days, I wanted to get the Relistor into me toot suite. After a series of adventurous episodes in trying to find a pharmacy which carried Relistor (Stacey eventually had to remind the chief pharmacist in the POB pharmacy of his responsibilities), I finally got some and went home. At about Noon I injected myself (first time I'd done that) with a dost of Relistor, and sat back and waited. I had some mild abdominal twinges, nothing major, and at about 1:45PM *BLOOP* my colostomy bag filled up. Whew. More continued to come out until about 6PM.

Theoretically once the nerve block is successful then I can stop taking opioids, but until then it appears I will be dependent on Relistor. Apparently the normal dosing frequency is every other day.




Wednesday 12 May 2010, 11:00AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151

We discussed the effectiveness of Relistor, and made arrangements for administering the second dose of Ixabepilone. I'll need an EKG the day before, and, because of some requirements of the study protocol, they'll need to take blood samples from me every 20 or so minutes during the administration of the second dose, and then once the day after the administration.

I also told Stacey that I had noticed that my hair was now coming out in clumps, not just on my scalp but also my beard and the rest of my body. She said that that was a known side effect, and that it occurs 14 days after the administration of Ixabepilone. I told her it was right on schedule :)

I also said that recently I had been feeling much better (presumably it's because of the Zoloft), and that for the most part my pains had diminished and were at a level I would consider "controllable". Because of that, I told Stacey that I was going to call and cancel the nerve block procedures scheduled for me.




I've seen the following attributed to Jimi Hendrix:

Life is pleasant. Death is peaceful. It's the transition that's troublesome.





Looking ahead, it appears my life is now defined by my interactions with doctors. Sigh.




Tuesday 18 May 2010, 10:30AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151

Preceeded by an EKG done at the Washington Heart Department of WHC

Uneventful.




Wednesday 19 May 2010, 11:00AM -- First ablation session, CASI (Center for Ambulatory Surgery Inc), 1145 19th St NW, Suite 850

Cancelled by me.




Wednesday 19 May 2010, 9:00AM -- Infusion Suite, WCI Room C2129

Second Ixabepilone infusion

Rescheduled from Noon at almost the last minute by Jake. The reason they wanted to draw blood from me at various points during the infusion was to see how my body was metabolizing the Ixabepilone. The actual blood draws were about 3 hours apart, and they took them from my left arm while the Ixabepilone was being poured into the mediport in my chest. The infusion was finished around 3PM, but they kept me until 4:30PM for the last blood draw of the day.

Something odd happened during both Ixabepilone infusions to date -- about an hour into the infusion, I started getting flushed, and felt very hot. In both cases I rang for the nurse, who came and stopped the infusion, waited about 5 or so minutes, and restarted the infusion. I have no idea why this happened (it's not a commonly-occuring side effect of Ixabepilone infusin), but there it is.

Jake gave me a new set of Dasatinib pills, and asked me to bring in the unused portion of the previous set, as well as the diary of my Dasatinib usage, when I came in tomorrow.




Thursday 20 May 2010, 9:45AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151

Day-after blood drawing

Uneventful.




Friday 21 May 2010, 11:00AM -- Dr. Mohan Verghese, Urology Oncology, Oncology Specialty Center, WCI Room C1148

This appointment was to swap out my suprapubic catheter for a new one. The nurses who were working with me were, all of them, completely ignorant of what was happening and what they needed to do. I was astonished.

As Dr. Verghese tried to manipulate the catheter in order to deflate it and remove it, it was very painful, unlike the earlier replacements mentioned above. I don't know why it was so painful, but Dr. Verghese made an appointment for me on the 26th to have the catheter swapped out under general anesthesia. Sigh.




Monday 24 May 2010, 3:00PM -- Pre-surgery testing, Admission Testing Center, Washington Hospital Center, 1st Floor, Room A101

Routine.




Tuesday 25 May 2010, 1:00PM -- Dr. Lee Ann Rhodes, Pain Management Specialist, Oncology Specialty Center, WCI Room C1148

Ooops. I completely forgot about this appointment, and didn't go. Dang.




Wednesday 26 May 2010, 8:00AM -- Surgical admission, Admission Testing Center, Washington Hospital Center, 1st Floor, Room A101

My "rabbi" (see above) picked me up early and we arrived there at about 7:45AM. The procedure was scheduled for 10AM, in one of the operating rooms on the 3rd floor, and took all of five minutes. Dr. Verghese wanted to swap my old catheter, size 16, for one which was size 24. These sizes are in "French units" (whatever that means), and refer to the diameter of the catheter tube. I'm assuming it means external diameter, but I'm not sure. In any case, a 24 wouldn't fit into the incision Dr. Bandi made under my dunlap (Dr. Verghese told my "rabbi" that the skin there was as tough as leather as a consequence of my earlier radiation), so he put in a size 22. I'm supposed to come back in three months and at that time he'll swap out the 22 for a 24.

Dr. Verghese said that the reason for going to a larger bore catheter is that it is less likely to clog.




Wednesday 26 May 2010, 9:45AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151

This was to draw blood as part of the second Ixabepilone infusion, and was scheduled before Dr. Verghese scheduled the operation, so I asked Jake how he wanted to handle it. He said to come by and get the blood drawn as soon as I was released from the procedure, so I did, around 12:30PM.




Wednesday 2 June 2010, 11:00AM -- Second ablation session, CASI (Center for Ambulatory Surgery Inc), 1145 19th St NW, Suite 850

Cancelled by me.




Monday 7 June 2010, 9:00AM -- CT Scan, Main Radiology office, Washington Hospital Center

Barium Contrast media -- yuck. The procedure was uneventful.




On Tuesday 8 June 2010 I went back to work for the first time since January. We'll see what happens.




Wednesday 9 June 2010, 8:00AM -- Infusion Suite, WCI Room C2129

Third Ixabepilone infusion

Originally scheduled for 9AM, but Jake called me on Monday and rescheduled the appointment to 8AM.

I first went to see Stacey. When she came into the exam room she asked me whether I wanted to hear the good news or the good news. It turns out that according to the CT scan, my lesions in my lungs have shrunk by about 15 percent. Because of this, she wanted me to continue participating in the Dasatinib/Ixabepilone clinical trial. As for the metastasis into my urethra, she said that it was difficult to see what was happening there in the CT scan.

I brought in my unused Dasatinib pills and the associated diary, and Jake gave me a new set of Dasatinib pills and diary. I pointed out to him that I was experiencing constant peripheral neuropathy, tingling in my fingers and toes. Apparently with some other people, the neuropathy is so severe that their fingers/toes are not functional, but with me it's just the tingling.

As before, the Ixabepilone infusion took a very long time, and I didn't get out of there until about 4PM.

While I was sitting there being infused, a researcher came up to me and asked if I wanted to participate in a survey on "Cancer, Vulnerability, and Financial Quality of Life". I was bored, so I agreed. It took me about 5 minutes to fill out the survey.




Wednesday 16 June 2010, 11:00AM -- Third ablation session, CASI (Center for Ambulatory Surgery Inc), 1145 19th St NW, Suite 850

Cancelled by me.




Wednesday 30 June 2010, 8:30AM -- Infusion Suite, WCI Room C2129

Fourth Ixabepilone infusion

Uneventful. Jake introduced me to Jason, who will be taking over the management of the clinical trial, as Jake is changing careers.

I showed Jake that the Ixabepilone was causing me to lose hair, but only in my beard region. My scalp hair appears unaffected. I asked him if this had been reported by other participants in this clinical trial, and he said that I was the only participant (at least among the participants at WCI) who had a beard. Hmmmm.




Friday 16 July 2010, 9:00AM -- CT Scan, Main Radiology office, Washington Hospital Center

The scan was uneventful, but the folks administering the scan were reeeeeeally dilatory. I didn't get out of there until 10:30AM.

As for the barium contrast media, yuck.




Tuesday 20 July 2010, 11:30AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151

Kalin, the nurse who is filling in while Stacey is out on maternity leave, said that the CT scan showed that the lesions in my lungs were a teeny bit bigger than they were back in June, but still smaller than they were in April.




Wednesday 21 July 2010, 11:00AM -- Infusion Suite, WCI Room C2129

Fifth Ixabepilone infusion

During the infusion, I mentioned to Jason, and to Jake, that I had noticed a side effect of the Ixabepilone which appeared unusual to me, and which I wondered if either of them could explain it. The Ixabepilone had knocked most, but not all, of the hair in my beard, but had left the hair in my mustache, and the hair on my scalp, unaffected. It had completely wiped out my axillary and pubic hair, but the hair on my arms, legs, and chest and belly was also unaffected. And, for the benefit of the ladies, the hair on my back was just as long and luxuriant as it had ever been. Both Jason and Jake agreed that that hair-loss pattern was unusual, that they couldn't explain it, and they'd make a note of it in their report on the progress of the trial.




Remember what I said (above) about messing up a bureaucracy by paying for something twice and not complaining about it? Well, many of the medical service providers (anesthesiologists, surgeons, radiologists, etc.) have been sending me bills for this and that service they provided to me and which wasn't fully covered by my insurance. Okay, not a problem, I just sent in a check for each bill I received. It turns out that these various offices aren't expecting that sort of behavior, that they're used to people ignoring their bills, and so they resend bills without checking very closely to see if the bill had already been paid. I had noticed that I was sending checks for exactly the same amount to the same office, but I didn't care enough to determine whether it was a duplicate bill or two different bills for an identical service performed twice. In July several medical service providers finally got caught up, and they sent me refund checks, totalling about $600. Tee hee.




On Monday 2 August, I called Dr. Verghese's office, and told the secretary that I had a suprapubic tube, which he had installed, and that it was supposed to be replaced at some point in the future, but I didn't know when. She said that I could come in on Friday 13 Aug, at 10:45AM. I thanked her and said that ever since Friday the 30th what was ending up in my urine collection bag was the color of blood, and she said that instead I could come in on Friday 6 Aug at 12:45. I thanked her and said that this morning (Monday 2 Aug) there was nothing coming out, and that I had used the appropriate tools to flush the catheter, and that I hoped I could hold out until Friday. She said that I could instead come in tomorrow. Tee hee.




Tuesday 3 August 2010, 2:00PM -- Dr. Mohan Verghese, Urology Oncology, Oncology Specialty Center, WCI Room C1148

By this time the urine output had reverted to normal urine color, so I had nothing special to show Dr. Verghese. Nevertheless he said I had done the right thing by flushing the line. I told him that yesterday afternoon (the 2nd) I had gone to a medical supply store and bought four catheter-tipped syringes and some saline solution, so I could flush the line if it clogged again. He approved.

Dr. Verghese said that if the catheter output is the color and consistancy of Burgundy wine then that's okay, but if it's like catsup then that's a problem. One cc of blood in 100 ccs of urine is enough to make it like Burgundy. He said that because my bladder had been irradiated, not only is my bladder much smaller that it had been in the past, but the inside lining of my bladder is more friable, and blood in the urine is much more likely for me than it is for others. Gee, thanks again, radiation team.

I asked him about UTI (urinary tract infection), and he said to forget it, that because I have a suprapubic tube my bladder has now been colonized. I asked if this was like the standard bacterial flora in your mouth, or the E. coli in your gut, and he said that was exactly right. He said that I now had in effect a permanent UTI. The only time to worry would be if I was experiencing chills and/or my temperature was over 102. Then I should head to the ER.

He also gave me the schedule for the (surgical) replacement of my suprapubic tube. See below.




Tuesday 10 August 2010, 8:30AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151

Uneventful.




Tuesday 10 August 2010, 9:30AM -- Infusion Suite, WCI Room C2129

Sixth Ixabepilone infusion.

Uneventful. Left around 3PM.




Friday 20 August 2010, 4:00PM -- Preoperative testing, Admission Testing Center, Washington Hospital Center, 1st Floor, Room A101

Routine.




Friday 27 August 2010, 8:45AM -- CT Scan, Main Radiology office, Washington Hospital Center

The tech who dealt with me said that because I had a stoma, and thus a shorter colon, I didn't need to have drunk all three bottles of Barium contrast media, I could have gotten by with only one. I'm not sure if I believe this, as my colon isn't actually shorter, it's just been relocated. I'll wait for the oncology folks to tell me this.

The tech also said that I didn't need to disrobe and put on a hospital gown, I could just wear my street clothes. When I got into the room with the CT scanner, they said whoops, I had to take all the keys and coins out of my pockets, and take off my belt (because of the belt buckle). Even then, they said that the metal in my zipper was a problem, but they'd just do the scan anyway. Gee, thanks, I think disrobing and putting on a hospital gown would be less inconvenient.

Once again: Barium contrast media = yuck.




Tuesday 31 August 2010, 8:30AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151

Kalin said that the CT scan showed that the lesions in my lungs were the same size they were at the previous CT scan. She said that, in my condition, that was a good thing -- my lesions weren't getting larger.

This time she scheduled me for *two* sessions into the future, not just the one they normally do. Hmmmm.




Tuesday 31 August 2010, 9:30AM -- Infusion Suite, WCI Room C2129

Seventh Ixabepilone infusion

Routine.




Wednesday 1 Sept 2010, 8:00AM -- Surgical admission, Admission Testing Center, Washington Hospital Center, 1st Floor, Room A101

The procedure (replacing my suprapubic tube with a larger one) is scheduled for 10AM.

Once again, the "Rabbi" (see above) went above and beyond, by driving me to the hospital, staying there while I was operated on, and driving me home. The procedure was routine, and it turns out I didn't actually need surgery (i.e., enlarging of the hole already in me), as the larger catheter fit in the hole. I'm now sporting a "size 24" catheter. Woo hoo!




I had been getting more and more fatigued, and on Wednesday 8 Sept 2010 I phoned Kalin and left a message saying that I was, by that point, so fatigued so often that it was difficult for me to get up in the morning, or get dressed, etc. I said that I *hoped* that the cause of the fatigue was the chemo drugs taken as part of the clinical trial, and that stopping them would reverse (or at least diminish) my fatigue. The alternative, of course, is that the fatigue is a part of the disease process and can't be alleviated. I asked her what I should do, and said that I wouldn't do anything (i.e., make any changes in taking the chemo drugs) until I heard from her.

She phoned back, and said she had discussed the matter with Jason and with Dr. Perry. She said that I was to stop taking the Dasatinib tablets, and that they'd evaluate me the next time they saw me.

By Friday 10 Sept, my fatigue level was greatly diminished. By that I mean that I was still weak, and unable to do many of the things I could have done a year or two ago, but at least I wasn't panting after even the slightest exertion.




By Thursday 16 Sept, I had dramatic and physical proof that the Dasatinib was no longer affecting at least one part of my body -- while I was taking the pills what was ending up in my colostomy bag was liquid, with almost nothing even close to solid. By today, what was ending up in my colostomy bag was the consistancy of Play-Doh. Also my beard started growing back.




Tuesday 21 Sept 2010, 8:00AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151

I discussed my current situation with Kalin. It turns out that even though I'd stopped taking the Dasatinib, I was still occasionally wiped out. The culprit is my exertions -- I have to learn to pace myself better. She agreed. I pointed out that Friday night I had actually gone dancing (I hadn't for the last two months or so, as I was too tired), and I had no problem, as I had paced myself appropriately.

She asked what I thought about going back on the clinical trial, and I said that I was definitively and firmly ambivalent. I said that because "metastatic rectal adenocarcinoma" (what I have) and "cure" can't be used in the same sentence, the most important thing at this point (and for my future) is "quality of life" issues, but that I wouldn't mind going back onto the clinical trial. She said that they'd monitor me more closely.

Dr. Perry said that my potassium level was way down, and that it would have to come up before they could infuse me again with the Ixabepilone. Kalin gave me a prescription for a potassium supplement, and rescheduled my infusion for tomorrow. She also said the dosages I'd be administered for both the Dasatinib and the Ixabepilone would be reduced.




Tuesday 21 Sept 2010, 9:30AM -- Infusion Suite, WCI Room C2129

Eighth Ixabepilone infusion

Rescheduled for tomorrow.




Wednesday 22 Sept 2010, 9:30AM -- Infusion Suite, WCI Room C2129

Eighth Ixabepilone infusion

Routine. My potassium level appears to have been sufficient.




Friday 24 Sept -- my fatigue was back with a vengeance. I called Kalin to let her know, and to tell her that I'd continue taking the Dasatinib pills.




Late evening, Friday 24 Sept -- About an hour after I ate dinner, I threw it all up. This had also happened Thursday night, but this time my shower enclosure looked like a Jackson Pollock painting. Monochromatic, yes, but still. So on Saturday I called Kalin's number and left a message saying that I had had it, that I couldn't take any more, and that I had stopped taking the Dasatinib pills and I was dropping out of the trial.

Sigh.




One thing I hadn't really paid too much attention to is the effect of gravity on my urinary system. The suprapubic catheter ends in a kind of junction, which I normally strap high on the front of my right thigh. From there I have one of two set-ups, either a large (2 liter) overnight bag, which isn't strapped to me but which I carry around by hand when necessary, or a small (32 oz) leg bag, which I strap to the front of my right calf. (There's a third set-up, where I plug the catheter and remove all the straps -- I only do that when showering).

When I'm at home, I usually spend most of my time reclining in my La-Z-Boy recliner. In this position, my calves are above the level of my hips. While this is good for my lymphedema, it has an interesting consequence for my urine.

If I am connected to the overnight bag, the bag is usually resting on the floor, way below the level of my body, and the urine flows out to the overnight bag. But if I have the leg bag on, then the collection bag (the leg bag) is above the level of my bladder. This means that my urine accumulates in my bladder, which is something that doesn't happen very often any more. When I stand up, there are various "whoosh" and "glub glub" sounds from my right leg.

I haven't urinated (as the term is normally used) since late January (eight months), and I haven't defecated since late June 2008 (27 months). Sigh.




Something else I hadn't noticed until recently. Ever since January, while at the Recovery Location and later when I went home, I've been wearing sandals. Partly because they're easy to slip on and off, but mostly because the outflow valve for the leg bag is at ankle level, and it's easier to deal with when there's fewer things in the way. Well, it's now October, and sandals won't work for much longer. So I've switched to anklet socks and slip-on Rockports.

The part I hadn't noticed is how much I was being affected by peripheral neuropathy in my feet. With the sandals, it regularly felt like they were sliding off (and several times they actually did), and I had changed my gait to accomodate this. With the Rockports on, the feeling they were sliding off was identical, but I knew, from a mechanical perspective, that they couldn't. So now I could differentiate between which sensations were real and which were distorted by the neuropathy, and ignore the sensations of slippage (even though I still feel them). I've also changed my gait back to what it used to be.




Tuesday 12 Oct 2010, 9:00AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151

Stacey isn't coming back. Boo hoo.

She took off for maternity leave, and when it came time for her to come back to work, she got a job at a different hospital somewhere in Virginia, doing much the same as what she did at WCI, but it's much closer to where she lives. Sigh.

Kalin said that at this point, WCI really had nothing more to offer me. She said there were basically two options for me -- one was for them to set up an appointment for me with the oncology folks at Georgetown University, and the other was for them to refer me to a hospice service. Georgetown has access to a different set of clinical trials than WCI has. I said that I was interested in seeing what Georgetown has to offer, but what I was most interested in was a third option Kalin mentioned -- take a break from any type of treatment for the immediate future.




Tuesday 12 Oct 2010, 9:30AM -- Infusion Suite, WCI Room C2129

Ninth Ixabepilone infusion

Cancelled.




Tuesday 19 Oct 2010, 10:30AM -- Hematology/Oncology clinic, First Floor, Lombardi Comprehensive Cancer Center, Georgetown University Hospital

I spent most of my time there with a physician's assistant named Emerson Padiernos, but the person in charge, and who spent some time with me before I left, was Dr. Jimmy Hwang.

The drill there for clinical trials was much the same as at WHC, it's just a different set of drugs being tested. I observed to Emerson, and later to Dr. Hwang, that most people seem to volunteer for clinical trials with this thought: "Oh, no, I don't want to die yet, perhaps this will do something, anything, to prolong my life to even the smallest degree!" I, on the other hand, know perfectly well that my condition is a death sentence, that I cannot be cured, and because of this my primary consideration at this point is "quality of life" issues. Any participation by me in a clinical trial would not because I think it might help me (I know it can't), but because I think it might help others (i.e., altruism on my part). Which means there's a subtle but significant difference in motivation, and continued participation. Both Emerson and Dr. Hwang understood and accepted this (apparently I'm not the first cancer patient they've seen with that type of attitude).

Dr. Hwang was intrigued by my Irinotecan infusions, and wondered why they stopped (it isn't in the medical documentation). I told him that two days after my third Irinotecan infusion was my urologic surgery (see above for details), and that at that point everything went haywire. I apparently handled the Irinotecan well, and that if he wanted to restart me on that then I didn't have a problem with it, but it's just that at this point I'm still enjoying the "no chemo" regimen :)




On the evening of Thursday 28 Oct 2010, I left a message for Kalin, saying that recently my fatigue level had gone through the roof. I no longer had enough strength to climb the stairs to my apartment on the second floor. I said that I knew this was coming, it's just that I had hoped it wouldn't come this soon. I asked her for a referral to hospice. Either that or a prescription for some amphetamines.




Community Hospice called me on the morning of Friday 29 Oct 2010, and someone from Community Hospice came over that day. When I told her the immediate reason for my consulting hospice was that I was too winded to reach my second floor apartment, she said "You want some oxygen"? I said "okay", and before the day was out I had an oxygen compressor, some portable tanks, and a big tank in case all of the other hardware breaks down.

All of this is happening much faster and is much more confusing than anything I had expected. It's very helpful, but very disorienting.




Tuesday 9 Nov 2010, 9:30AM -- Dr. David J. Perry, Medical Oncology Suite, WCI Room C2151




Friday 12 Nov 2010 4:45 AM - the Patient died. This is the Recovery Coordinator. I will update w/details as soon as I can.




15 November 2010

Recovery Coordinator here. I started writing the below days ago but it has taken until now to complete these thoughts without crying too much. My deepest apologies.

On Friday, October 29th, the Cook, a female relation, and I visited the Patient at his home. He was happy to see us, and had asked that we bring food from a fast- food drive-thru place. The Patient ate what we brought, but then experienced what he would call "spectacular vomiting". He admitted that he had not been able to keep food down for several days, then asked for more Cherry Coke.

On Wednesday November 3, a childhood friend of the Patient and I visited the Patient. The friend and I both noticed that the Patient seems tired, in fact we left when he seemed more interested in sleeping than in conversing.

On Friday November 5, I visited again, and the Patient seemed to be more himself. I brought him food (Brown Sugar Cinnamon Pop Tarts) and noticed that others have been to visit, evidenced by the Cherry Coke in the frig. During this visit, we also met with Susan, the "Hospice Coordinator" from Community Hospice. We discussed the possibility of having food delivered daily, as a number of friends and family members had been visiting and feeding him, but I could not plan on that every day. {note: the Patient and I are very grateful to all of you, as well as to you who called him. It has been wonderful to see that one person has touched so many other lives; it is painful as well, as we faced the inevitable.} Susan said she could arrange food delivery with a group that brings meals once a day.

I'd also like to add that the Patient FINALLY got his will, medical directive, and Power of Attorney documents completed, signed, and notarized on November 5.

Over the last several weeks, a number of people visited the Patient, both family and friends. Some contacted me to let me know, and I do appreciate knowing. Others, well, I heard they visited with food and/or playing cards, etc. Each visit was greatly appreciated by the Patient and was helpful.

On Wednesday, November 10, the Rabbi arrived at the Patient's home to take the Patient to his appointment with Dr. Perry (the date in the blog was incorrect). When the Rabbi saw the patient, he was immediately concerned over the patient's inability to get up (exhaustion, no energy). The Rabbi called, and I came to the Patient's home, and we called the hospice people. They said they would send a transport ambulance to take the Patient to the hospice facility. After an hour, the Rabbi left; I stayed with the Patient. The Patient would doze off until a door closed or the phone rang, then he was startled awake, only to doze off again. This new development was a little disconcerting. The ambulance finally arrived (90 minutes to two hours became two and a half hours plus) and I told the crew he could not walk. About five people came in with a chair for carrying him downstairs. When the Patient stood, he was overwhelmed and simply said "too many people" - probably more around him then he could stand. He was chair-carried down to the ambulance and loaded onto a gurney for transport to the hospice center.

Once they got the Patient into the ambulance, the driver could not start the vehicle. He asked if anyone (me) had jumper cables. I dug around in the Patient's vehicle and found a set. SO, the Patient provided the energy to start the ambulance to take him to the hospice so he could find more energy. The driver told me to follow them to the Hospice, then promptly ran the first traffic light we came to. I was fortunately able to find my way to the Hospice center without their guidance despite having never been there. The Patient was resting in his room, and when I saw him he was sleeping and I was not able to awaken him. I left then, as he was there for his own rest and comfort. A few hours later, the Patient's friend visited, and reported that she was able to talk with him and joke, and that he was more himself again.

While there at Community Hospice, I met with Thomas, the LCSW. He made a copy of the Advance Directive and Power of Attorney documents, then we sat down so he could explain the way the hospice center works. His first statement was to ask if the Patient had funeral arrangements. That shocked me, and I don't remember anything else Thomas asked, as all I could think of was "but he's only here to get stable, not to die".




Thursday 11 November 2010

8:42 AM - I phoned Community Hospice, asked for the Patient's status. I was told the Nurse was in his room and that she would call me back. 9:28 AM - I phoned again, and was told the nurse would call me back ("it is a busy day") 10:52 AM - I phoned again, and was told the nurse would call me back, ("short-staffed today"). 12:30 PM - I phoned again. An Aide finally spoke to me after being assured that it was OK (I have Power of Attorney for him), "he's stable." She informed me that an xray of his lungs was taken, and results are pending. Also, if he can tolerate food and shows any interest in eating, he can eat and be fed. "A visitor can help feed him." The staffer got another call and put me on hold. Eight minutes later, the call disconnected.

Soon after this a friend who was visiting the Patient called to let me know that the Patient was unable to eat anything but he drank some Orange Juice (through a straw), and he would perk up but could not stay awake to chew any food. The friend brought a newspaper for the patient to read, and even though he slept through most of her visit, he did manage to say to her "don't need... physical... body... but need...to ... stimulate brain". Later, the Rabbi called and reported that the Patient opened his eyes but then his eyes rolled back into his head.

I placed my fifth phone call at 3:42 - "I'll have the Nurse return your call". I then sort of ranted about the four previous calls and the same "the nurse will return your call" empty promise I had received...about two minutes later the Nurse "Barbara" called me. Her first words were "his respiratory distress is impressive" - not exactly comforting words. She also told me that the Patient was receiving a "reasonable" dose of morphine every four hours (what is a "reasonable" dose?), and she added that the Patient did interact verbally with the nurses last evening, when she was working. I told her I would be in to visit him later in the evening.

Doctor Roth (from Community Hospice) phoned me just before 5 PM and told me I'd better come now - that the Patient was failing fast. I rushed down to the Hospice and walked into his room. I was not prepared for there to be no IVs or breathing apparatus attached. I then realized that he did sign the DNR and they were simply following the Patient's wishes (that did not make me feel any better, though). About five minutes later, the nurse Barbara came in - she explained that last evening she had given the Patient a bath and he then relaxed and went to sleep, pretty much as he was now.

I sat with the patient for a couple of hours, holding his hand for awhile (totally non-responsive) and shaking him awake a couple of times. Each time he "woke" his eyes opened but there was nobody there. I whispered into his ear that it was OK to leave, that all would be OK. Then I cried. The Rabbi arrived, with his wife. I was spent, so I left them there and went home to sleep. They stayed a couple of hours. Later the Patient's favorite girls arrived to visit and stayed awhile. All reports to me were that he was the same - labored breathing (long time between breaths) and non-responsive.




Friday 12 November 2010

At 5 AM the phone rang. It was the overnight nurse, calling to let me know that the Patient had died at 4:45 AM. The Cook and I cried, then started with the preparations for celebrating a life.

On Friday afternoon, I went by Community Hospice to retrieve the Patient's personal effects. There was a staff meeting (or so it seemed) going on in the conference room (I could see into the room) but nobody was at the desk for several minutes, leaving me standing there. I would have walked over to his room, but I was afraid there may be another patient there. Finally someone wandered over to the desk. I asked for his belongings and the woman went to retrieve them. It was only after I was almost home when I realized that the Mums delivered by the Patient's friend were not included in his belongings. I guess someone at the Hospice liked them.




Monday 15 November 2010

The Funeral Home called to let me know that there was a problem getting the death certificate signed. The doctor who was on duty when the patient died has to sign the certificate. I called Community Hospice at 3:21 PM and was told that "Dr. Williams" has to sign the certificate. They "expect her to be in later". At 6:18 PM I called again. After being on hold for five minutes, someone told me they were "trying to locate Dr. Williams" and asked me to call back in one hour. At 7:50 PM, the same person answered when I called and immediately informed me that Dr Williams had signed the death certificate "electronically". {I wonder what took over 3 1/2 days. The Patient's body has been in the Funeral Home since Friday morning.}

The Memorial Service for the Patient is scheduled for Saturday November 20 at 11 AM