*My brother, John, was diagnosed with cancer last April, shortly after his 19th birthday. While he was undergoing treatment, I kept the following log of what was happening so we could keep track of when things happened and answer questions about his history from the endless stream of new medical personnel that had to be brought up to speed.
I don’t know why I’m posting this. Maybe I’m attention-whoring, I don’t know. But I’m not sure what to do with this diary now, and if you want to find out what it might actually be like for you or a loved one to go through treatment for a serious cancer, this will shed some light.
Most of the medical terms you can look up on Google. Feel free to ask questions, but there’s a fair chance I won’t feel like keeping tabs on this thread at some point, so be prepared for me to vanish. I’ve removed a few names and added a handful of clarifications, but otherwise this is exactly what I wrote as treatment went on. I think it’s interesting, but it’s not a happy story – just so you know.*
Friday, 4/18: Pre-dawn OR trip, severe generalized ab pain, bladder occlusion. CT scan, Biopsy. Prostatic Rhabdomyosarcoma. Can’t eat. Admitted.
~Sun, 4/20: Fever starts, fluctuates between 99 and 103.
Tue, 4/23: Failed semen donation.
Wed, 4/24: Failed semen donation (w/ Viagra).
Thu, 4/25: Rectal bleeding. (Sloughed off scab from biopsy?) New roommate (David). Oxycodone up to 10mg / 3 hours prn.
Fri, 4/26: Marrow biopsy and testicular segment donation. (No central line b/c of concern about fever/infection.) Scans clean, no metastases anywhere (which is surprising given size and type of tumor). “Intermediate risk.” Rectal bleeding is from tumor?
Sat, 4/27: Started chemo. Can’t hold down water. Is fever C-Diff? Private room.
Sun, 4/28: Fever breaks? Slept well last night. Keeping water down (but not Ensure). Trying to taper from oxycodone (but really just stopping cold turkey).
Mon, 4/29: Fever back. Going to be discharged soon, probably tomorrow. Hoarding chux, foleys, etc. Cultures all negative, no infection.
Tue, 4/30: Drew blood for more cultures. Tried to void w/o cath: success! (On hands and knees, etc.) Talked with docs about radiation, to start in about 4 weeks. Hopefully discharged tomorrow.
Wed, 5/1: Discharged from hospital. Chemo treatment before leaving.
Thu, 5/2: Nausea. “Small” stomach, can’t eat much volume.
Fri, 5/3: Appetite improving slightly.
Sat, 5/4: Urine being discharged from rectum (?). Probable fistula.
Sun, 5/5: Visiting Nurse Service came by; interviewed John, probably won’t be back if things stay as is.
Mon, 5/6: First radiation appointment (setup only, no treatment).
Tue, 5/7: Fever higher, seems a bit listless.
Wed, 5/8: Admitted to hospital. Came in for outpatient chemo, but low white count + fever of 102.6 + rectal fistula = observation required.
Thu, 5/9: Fever responds well to Tylenol and very well to Motrin (first time Motrin permitted). White count improving (still low).
Fri, 5/10: Temp still low. Docs from Infectious Disease think antibiotics not necessary for now.
Sat, 5/11: Discharged.
Sun, 5/12: Outing to movie (Iron Man 3); John very satisfied with leg bag for foley.
Mon, 5/13: Trimmed hair down to buzz-cut. – John complains of localized “tumor pain,” seems distressed about it. (Fistula problem?) Goes away. – Mom argues with OR scheduler, eventually gets them to move up portacath operation to Wednesday.
Tue, 5/14: Appetite is pretty good, but taste buds are still off some. Sweet yes, salty no.
Wed, 5/15: Surgery to implant portacath, then triple-chemo.
Fri, 5/17: Shaved head. Went out w/ friends, got tired/puked, but had fun (?).
Sun, 5/19: Rectal bleeding has stopped?
Thu, 5/23: CT scan at radiology in order to refine aiming.
Wed, 5/29: Found out radiation has been scaled down to 20 (from 28), tentatively, due to tumor collapse. [edit: misunderstood; actually 28 total.]
~Mon, 6/17: Expected diarrhea starts, slowly ratcheting up. Bladder spasms.
Mon, 6/24: Discomfort, bladder spasms, etc. increasing. John asking for more pain management from radiation-oncology.
Tue, 6/25: Radiation ends!
Wed, 6/26: Triple-chemo.
Thu, 6/27: John very lethargic, dozing all day. (Dad & Evan in W. Virginia.)
Fri, 6/28: John feeling better.
~ Mon, 7/1: Discomfort from catheter increasing. Lots of bladder spasms, much sloughed-off bladder lining and blood in urine.
Mon, 7/8: Catheter causing a lot of pain/annoyance.
Tue, 7/9: Catheter removed. Not sure if fistula is healed: John thinks no leakage yet, but hard to tell (?). Still lots of lining & blood in urine, but John is much more comfortable w/o the cath.
Wed, 7/10: Chemo. John says he’s stumbling more often, due to neuropathy. John also very tired due to almost no sleep last night (needing to urinate every 90 minutes or so). – [VarlosZ] took part in focus group at hospital.
Fri, 7/12: Fistula apparently not healed, John leaking. John reports opiate withdrawal symptoms, going to taper from oxycodone. – Urology says ok to keep catheter out for now given John’s discomfort, maybe until halfway through chemo.
. . . chemo continues . . .
Tue, 10/22 – ER visit due to severe constipation/pain. X-ray shows colon is backed up. Lactulose, senna, colasce, myralax twice a day for a week, but no admission.
Thu, 10/24 – Came in for checkup, spiked weird, yo-yo fever (as high as 102.4). White count ok, antibiotics, come in tomorrow.
Tue, 11/12 – John has temp of 101.7: two-day IV antibiotic course. Also, blood count very low, getting transfusion (2 units).
Thu, 11/14 – Transfusion helped John’s dizziness (no longer almost passing out every time he stands up). –
Acquired some pot for John (he wanted something non-narcotic for pain, and to fight nausea & promote appetite). He says it helps a good amount.
Tue, 11/19 – Feeding tube (N-G) in, Ativan etc. on board to keep John comfortable. Need to clear out with go-lightly to prep for feeding and scan.
Thu, 11/21 – Two gallons of go-lightly in (plus some Lactulose etc.), but bowels not clear. Just some diarrhea. Accompanied by vomiting: feeding tube vomited up. Still doing scan tomorrow despite bowels not being clear. John miserable, in discomfort, can’t take opiates b/c of constipation.
Fri, 11/22 – John admitted; scar tissue is blocking colon, they want to do a temporary colostomy ASAP. John concurs.
Sat, 11/23 – Scheduled surgery for tomorrow to put in colostomy, and also replace feeding tube w/ gastronomy tube.
Sun, 11/24: Surgery went well. John on a dilaudid PCA, he’s comfortable.
Mon, 11/25: No apparent complications (fever of 100, but docs not concerned). Tomorrow’s chemo delayed until colostomy is healed, probably a couple weeks.
Tue, 11/26: Colostomy bag and gastronomy tube both working; John feels much relieved to be moving his bowels again, even through non-conventional means. John taking the lead in learning how to manage his various tubes/bags himself. Independence = earlier discharge.
Wed, 11/27: John healing up, but still with pain. Going to try to ween himself off the dilaudid PCA and get by with oral OxyContin, hoping for a Friday discharge (Miriam & friends in town for Thanksgiving).
Sat, 11/30: John discharged. Gastro tube feedings at home start; works well, apparently.
Sun, 12/1: John has disconcerting amount of pain in abdomen, eventually determines it was probably just gas.
Mon, 12/2: Home tutor cancelled, but tomorrow’s chemo still on (ugh.)
Tue, 12/3: Food pump conks out; replaced. – Triple chemo, blood transfusion.
Thu, 12/5: John complaining of stubborn lower-back pain, presumably from lying on his back so often post-op. Can’t sleep, says ibuprofen/oxycodone not really helping. Some nausea at night.
Sat, 12/7: John’s pain/discomfort actually opiate withdrawal (mainlining post-op dilaudid for a week straight will do that). Methadone taper, John much more comfortable. Gabapentin for neuropathy making John drowsy/loopy (supposed to go away after a few days).
Tue, 12/10: Ultrasound for lump in scrotum while at chemo. Pilonidal cyst? Not considered serious, whatever it is.
Sat, 12/14: John’s been very low-energy, logy. Probably some of this is still the opiate withdrawal, but he also says he mostly just wants to sleep since he’s just going to be uncomfortable and bored when awake. He also wears out very easily, needing to cut short excursions, etc.
Tue, 12/17: Fistula re-opens. Gets Foley cath put back in.
Wed, 12/18: Goes in to get suprapubic catheter installed, but mass in the way makes it impossible. Going to have nephrostomy tubes put in tomorrow. Kidneys and bladder in rough shape. Blood/urine being soaked up by mass, causing it to expand and get in the way, leading to backed up stagnant urine in kidneys (causing infection and poor kidney function).
Potassium is abnormally high. Going to be admitted to hydrate him and fix the potassium.
Thu, 12/19: Goes in for surgery to have nephrostomy tubes put in and supra-pubic tube as well while they’re in there.
Rushed in to surgery due to blood pressure crash morning of. No suprapubic tube, but nephrostomy tubes put in successfully. Pain is not well managed today: too-low dose of fentanyl, which wears off too quickly. Resistance to changing it due to uncertainty about kidney function.
Fri, 12/20: Finally switched over to dilaudid in the early AM. John is much relieved.
Sat, 12/21: About 15 hours after foley cath removed, John has full bladder (mostly blood) and can’t void. Very difficult/traumatic catheterization follows.
Sun, 12/22: John in lots of pain, very cranky. Methadone added and helps considerably.
Catheter starts producing brown sludge along with the blood. Excretion from tumor? Urine & bowels are already diverted, so ???
Mon, 12/23: Dr. Xxxxxxx plans sonogram (and probable CT scan) to figure out what brown sludge discharge is. Sample taken. John on track to go home tomorrow if scans are not alarming and pain can be managed orally.
Pain is still considerable, waxing and waning. Surgeon says pain might be ureter spasms?
John in extreme pain in the evening (9 out of 10).
Tue, 12/24: Scans show nothing, docs figure pain is ureter spasms. 30mg of Toradol knocks out the pain almost entirely, but side effects make docs reluctant to use it.
Wed, 12/25: Low key half-Christmas; no gifts, but dinner. Docs eventually decide to give John 15mg of Toradol prn every 6 hours (John says it’s very effective). Hopefully spasms subside before dosage limit is reached (5 days?). [edit: Toradol not prn, just a one-time dose; John is furious.]
Thu, 12/26: Docs stop Toradol and severe pain returns, but eventually decide to give him ibuprofen and risk the bleeding. Ibuprofen very effective.
Chat with surgery, urology, and Dr. Xxxxx about surgeries, prognoses, and likely long-term functionality once chemo is finished (in 9 weeks). Fun. John expected to lose most or all sexual function as well as normal eliminatory function.
Fri, 12/27: Triple chemo (inpatient). PCA removed, but methadone/oxycodone continues; John misses PCA, but is comfortable enough. MRI in the evening. John scheduled to be discharged tomorrow.
Sat, 12/28: Discharged.
*** 2014 ***
Fri, 1/3: John accidentally yanks out a nephrostomy tube, trip to the hospital to fix – both tubes replaced.
PT scan planned for next week to check out a weird shadow on the hip.
Wed, 1/8: PT scan. Did not go well. Metastases in the hip, lung, and spine. Only bad options: extremely toxic chemo that would probably be fatal, likely palliative/life-extending lower-intensity chemo, or doing nothing.
John can’t gain weight because tumor is sucking up all the calories. Great.
Fri, 1/10: Meeting with Drs. Xxxxx, Xxxxxx, and the pediatric surgeon. Going to start low-intensity chemo on Wednesday. Discussed trans-rectal debulking of the tumor if pain becomes too severe, but not now. Could also radiate lesion on the hip to relieve pain if necessary.
Sat, 1/11: Jeremy [friend] comes down from college to spend the weekend with John following PT scan results.
Sun, 1/12: Movie outing (“Inside Llewen Davis”) with everyone and Jeremy. John in a good mood, thankful that Jeremy is here.
Mon, 1/13: Slowly increasing discomfort from tumor pressing up against everything else, difficult to sit in a comfortable position.
Going through pain killers at a healthy clip. 5mg of methadone twice a day, oxycodone up to 10mg prn, probably about 30mg+ a day.
Tue, 1/14: Appetite and taste are significantly improved. Getting down roast beef sandwiches and apples, says things are starting to taste right again.
John complaining of what he takes to be a bruise or a muscle pull in his back/ribs.
Wed, 1/15: First day of new chemo. Looong day at the clinic (got transfused, had to wait for pharmacy delivery that never came, etc.). Talked with surgeon about debulking, John says maybe in a couple weeks, and it can be done w/o interrupting chemo.
Thu, 1/16: Some constipation.
Fri, 1/17: Bad day for tumor pain, and apparently some rectal prolapse. John in a funk, refuses nighttime feed and methadone.
Sun, 1/19: Visiting nurse comes by to talk about home-hospice pain management (IV narcotics). Discussion of advance directive put off until John seems closer to being mentally ready for that talk.
Lots of nausea/vomiting, continued bad pain and prolapse. Missed 5th dose of chemo (Camptosar; last dose of this cycle) due to the vomiting. Also missed feed.
Mon, 1/20: Complaining of serious stomach cramps; not much can be done about that. Thinks he might be constipated. Due to cramps John demands further delay of last chemo dose.
Now taking a few tbs. of coconut oil a day through the g-tube (in addition to the 6 cans of Ensure daily, which John fights and delays constantly).
Tue, 1/21: Cramps seem to subside when constipation resolves itself.
Wed, 1/22: Chemo at the clinic (Temsirolimus). Counts look good, no transfusion needed, etc. John claims it feels good to be up and about, vows to stop laying on the couch & sleeping all day. Let’s hope: he’s been in a horrible funk all week. Depressed and grumpy and in pain, just lying there (not even watching tv).
Fri, 1/24: John’s mood and alertness have been much better. Visiting Nurse came by to talk about therapy, mental well-being, etc. Nice but useless.
Sat, 1/25: Slept in uncomfortable position, apparently, says back is very sore waking up. Also complains of pain from g-tube site; not serious (?), but annoying.
Sun, 1/26: Nephrostomy tube pulled loose, still mostly draining (?). Probable trip to hospital tomorrow. John in rough shape, movie outing cancelled.
Mon, 1/27: Nephrostomy issue seems to have resolved itself after having flushed it with water.
After squaking to the docs, picked up huge resupply of pain meds (450 ML of liquid methadone, 240 10mg oxycodones).
Spikes temp of 103.3 in the evening, trip to ER. John is MASSIVELY uncomfortable and lethargic. John given IV antibiotic, sent home in the early AM once temp came down (thanks, Motrin).
Tue, 1/28: Trip to clinic for 2nd dose of IV antibiotic. Hemoglobin low, has to come in tomorrow for transfusion. (John dragging his feet so effectively, it was too late to do both things in one trip).
Wed, 1/29: John is in too much pain to move; trip to clinic for blood transfusion postponed.
Thu, 1/30: More methadone/oxycodone has the pain much better-managed, able to get to the clinic for transfusion today (2 units). Downside is he’s much more out of it, spent most of last two days dazed & semi-conscious on couch.
Fri, 1/31: Seeming change in mental status? Extremely tired, sleeping/semi-conscious/confused almost non-stop since getting back from clinic yesterday. Dehydration? Brain mets?
Ran in some IV fluids in the PM.
John is more alert after fluids, but in severe pain any time he tries to move. Also extremely weak; difficulty walking, holding things. Sweating profusely at times (partly, but not solely, due to opiates).
Sat, 2/1: John is basically catatonic. In the rare moments when he opens his eyes and seems to (barely) recognize the outside world, he might move his lips but is unable to form words. Otherwise he seems to be in a perpetual light dream state, pantomiming words and hand movements.
Fluids are running, but unable to tell if John is in pain, or wants to drink something, etc. Hospice nurse came by. Getting liquid versions of all his meds so they can be injected into g-tube. Hospital bed delivered.
Stuyvesant diploma is delivered. Perfect timing, guys.
Sun, 2/2: John seems slightly more responsive, intermittently, but acts like a stroke victim. Slurred speech, mixed up vocabulary, trouble understanding others. Miriam [girlfriend] flies in from college to be with him.
Mon, 2/3: Once again, is more responsive in the morning, right after waking up. Still pretty confused, and very slurred words, but definitely aware of surroundings and saying things with a purpose. Fades back to semi-consciousness pretty quick. . .
. . . Rallies quite a bit when Miriam comes to stay with him. Still confused, with slurred speech, and his memory fails him, but he can carry on almost normal-SOUNDING conversations.
Keeps insisting that he’s going to get up and go to the bathroom (unable to stand without assistance, let alone walk or change his diaper). Hard to dissuade him. Confusion mixed with his innate stubbornness is a bad combination.
Tue, 2/4: Much less alert today. Occasional one-word answers to direct questions, but otherwise no interaction.
Received a box with emergency-care hospice supplies (haldol, sub-lingual morphine, etc.). Also received new g-tube pump.
Wed, 2/5: Much MORE alert today. Two major attempts to escape and go to the bathroom, both ending in tears. Just doesn’t understand/remember that he’s totally unable to get there, and unable to be convinced.
Thu, 2/6: In the AM, more alert than he’s been in almost a week. Words less slurred, making more sense, carries on almost normal phone conversation. (Still pretty alert, but rather confused in the afternoon.)
Large abscess on the perineum (leaking puss, etc.). Ointment and antibiotics started. Also starting to fight his nasty diaper rash.
Fri, 2/7: Bad night sleeping last night, John says. Stomach very uncomfortable. Requests large painkiller dose early in the AM.
Tried running g-tube feed with Ensure (rather than Gatorade + sugar water mix we’ve been using for past week). Quickly became nauseas, vomited hours later in the PM.
Sun, 2/9: John not tolerating g-tube fluids (Gatorade+sugar water), vomiting. Going to just oral fluids and some meds via g-tube.
Upping pain meds gradually.
Wed, 2/12: Distended belly, very sensitive/painful.
Thu, 2/13: Belly less distended (gas?). John very weak. Skeletal. Afraid to turn over or lie on his side, says he’s effectively paralyzed from waste down (not literally).
Sat, 2/15: John very out of it past 2-3 days, only a brief period of communication.
John unable to help with changing, so new diapers not really possible. Just pads on the bed now.
Pretty bad bed sore, lower back.
Respiration rate down to 5/minute generally.
Mon, 2/16: John in vegetative state. No longer getting fluids. Won’t be long now.
Wednesday, 2/19: John stopped breathing at 7:41 PM.