Doug Leverich's memorial page |
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In Loving Memory: 1978-1997
Still groping through the darkness of her sorrow, Janet was asked to recall the progression of her Doug's grave illness. It was premature to revisit the journals she kept and the images of the senseless death of her child, but out of a refined sense of a higher obligation, she reached deep into her soul and offered the chronology that follows below.
Her generosity of spirit shines through a complex prism of inconsolable grief, a keen sense of the absurd, and fervent hope that others may never suffer a loss of someone as exquisite as Doug.
After you read this, you will not be the same. NHL must be defeated.
Bill, you had asked for a synopsis of Doug's illness.
Don't know when it began, but here's 1997 : well, actually Dec. 1996 xmas vacation he had a cold.
Apr 24 - Had shoulder pain and night sweats; went to UCLA student health several times. They said it was muscle pull- prescribed pain killers.
May 5 - pain too much so he called an ambulance to take him 1/4 mile down hill to UCLA medical center. Was admitted and stayed thru mother's day (May12). Diagnosis: acute pericarditis and pleural effusion. By May 12 pain all gone and pericarditis alleviated and most of pleural effusion gone (Docs in Aug said this was NOT related to later NHL). Supposedly had every test known to man at UCLA. The next week had some night sweats.
June 14 came home from college. Felt a little weak and tired after finals week. But still got a 3.6 GPA.
June 15- August 8 had a summer job at radio station. August 10th bungee jumped. End of July - felt shoulder pain again, but it was a little different and his back hurt too. Since he was 18 and Mr Independent he called a cardiologist in our insurance book and made an appointment. Saw him several times over 2 weeks without me along. Dr. said it was a slight recurrence of pericarditis, took an xray, prescribed vicodin. Then Vicodin ES. Says "Don't worry about the swollen lymph nodes in neck. They're nothing."
August 10 - Sunday - Doug's pain worse, I call cardiologist on call. He prescribes Vicodin HP and asks why he hasn't had a CT scan. Says he'll tell Doug's Dr. (his partner) to order one.
August 11- Monday afternoon, I call cardiologist and ask about CT. Called 3 times til they order one for Wed. Doug's pain worse. Dr says to double up Vicodin ("take as much as necessary")
August 12 Tuesday - Doug seems OK, actually chipper, I go with him to Dr checkup then we go out to lunch. Later in afternoon Doug says he feels funny and tells me that he made pain go away in the morning by taking 8 vicodin. I rush him to El Camino Hosp. ER. They admit him for observation and said no meds for 24 hours. Next morning he's in excruciating pain and finally do CT.
August 13 wed - CT done and later in afternoon, lots of Drs. start to gather and whisper, and start offering Doug pain killers "what kind do you want? Morphine ?" Still lots of whispers. Drs. finally say there's a "mass." and will order biopsy. They look back at July xray and say it was there. Glen (Doug's brother) comes home.
Aug 14 Thurs needle biopsy. Dr has to try 5 times to get sample. Doug's neck starts to balloon. Results are inconclusive. High fever for first time of 105.7F
Aug 15 Friday open neck biopsy. Dr comes out to waiting room and tells me it's a malignancy - cancer. I lose it.
Aug 15 Sat. Oncologist says it's lymphoma, but won't know what kind for a few days. Need to do slides and stuff. Doug starts fevers and hallucinations and major night sweats.
Aug 18 Mon. neck MRI and head CT; full hallucinations still. Neck is huge on left side
Aug 19 Tues abd. MRI. Nurse says something's wrong, rapid heart rate of 155 and totally out of it babbling. Moved to ICU. Oncologist says prelim slides lean toward Ki-1 Anaplastic Large Cell Lymphoma. Must start chemo or won't make it. Emergency CHOP at 11pm; high flow level of oxygen (14+ liters) needed.
Aug 22 Friday starts to come out of hallucination. Fever only 102.5. Severe constipation.
Aug25 Monday given red cell transfusion, no more hallucinations or fever; now is lactose intolerant
Aug 26 Tues. Oxygen removed and moved to regular chemo floor; given platelets (has allergic reaction of huge puffy face and lips) and neupogen. Second opinion of Stanford's lab confirms Ki-1 Anaplastic Large cell and t-cell, CD-30+ lymphoma, stage IV b, high grade.
Aug 29 Friday wbc up to 2.0 and plt up to 46. Has a night fever again
Aug 30 Sat. wbc 8.2 and plt 92 COMES HOME
Aug 31 Sun has sweats and fever again
Sept 1 Mon. Labor Day go to onc's office for xray, he says nhl's coming back and calls Stanford
Sept 2&3 outpatient clinic @ Stanford they do BMB and blood work; fevers & sweats. Right side neck huge, huge mediastinal, left armpit, abdominal, and left lung a little. Also, it was against his T - spine (between t2and t3) and that's what caused all the pain initially. Glen tested for HLA match. They determine NO bone marrow or CNS involvement.
Sept 4 Thurs - admitted to Stanford. He has night sweats and right half face sweats. CHEMO= vincristine, decadron, 2 days ifosfamide + messna. Decadron gives nasties and hiccups really bad (needs thorazine to stop them)
Sept5 19th birthday, has PICC put in, Doug plays grand piano in their solarium
Sept 7 Sun. new bumps appear on back of head and now under right side of chin. They stop the ifosfamide saying that caused new bumps. Start 3 days of Ara-C and VP-16, do spinal tap and give blood transf. Methotrexate intrathecally.
Sept 9 Tues. COMES HOME, still some sweats
Sept 12 Friday outpatient CHEMO of Vincristine and Bleomycin. = rigors, chills, & sweats. I start giving neupogen at home. Sweats continue. PROTOCOL they'll follow is variation of VACOP-B = VP-16 (every 4 weeks), Ara-C (every 4 weeks), Adriamycin + decadron (every other week), Vincristine with Bleomycin (every alternate week) + methotrexate intrathecally every other week, prednisone (80mg every other day). For a total of 12 chemos weekly to be followed by Autologous peripheral stem cell transplant (Glen is not a match). They won't use cytoxin since it's in the same family as ifosfamide.
Sept15 Mon. he feels very weak, I take him to outpatient - given 2 units red cells
Sept 16 & on - knees start to really ache, feet hurt and fingers numb (When home during Sept. goes to old High School to start project with students)
Sept 19 Fri - can't have scheduled chemo due to platelets of 13
Sept 20 Sat - feels weak, go to outpatient and has blood transfusion, we stay overnight
Sept 23,24 Tues. & Wed outpatient clinic chemo - Ara-C, Adriamycin, Decadron =very bad hiccups and depression (given thorazine to relieve)
Sept 25 Thurs feels OK first epogen shot at home by me (3 x week)
Sept 26 Fri - PICC has to be removed due to crack, feels weak, chest pain, right eye droop
Sept 27 Sat. feels very weak, go to outpatient, given 2 liters fluid for dehydration still having night sweats every night
Sept 29 Monday 103.3F as usual, had spinal tap and Methotrexate intrathecally, Head MRI, chest xray
Sept 30 Tues Chemo= vincristine + bleomycin + benadryl. = rigors, chills, fevers, drenching night sweats. By Friday, feet and fingers very numb and painful, very weary and weak.
October 4 Sat. bad backache and rash on upper left chest. 104F Outpatient clinic for Lumbar MRI, still major sweats
Oct 6 Monday a.m. chills, 103.7, Dr says to stop allopurinol and bactrim, sweats may be allergic reaction?
Oct7&8 Tues&Wed chemo of Adriamycin + VP-16 (+zofran and decadron), 2 units of red cell transfusion. Hiccups really bad until Thurs. thorazine to stop them. Night sweats continue
Oct 11 Sat. very weak, temp of 96 F + sweats. Go to outpatient, very orthostatic (standing BP of 47/27) given 3 liters of fluids.
Oct 12 Sunday minimal sweats, feels good. We go for ride to a reservoir and see a bobcat in early morning. Monday - feels really good with minimal sweats.
Oct 14 Tues. chemo of vincristine & Bleomycin + 2 units of blood . = rigors, chills and sweats but they start this time while Dr is there so she orders demerol and rigors stop! Somewhere around this time could tolerate milk again.
Oct 15 Wed. feels dopey and spacey, temp 97. Bloody nose, minimal sweats
Oct 17 Fri morning sweats, 103.5, at outpatient Methotrexate intrathecally. Chest and Abd CT. DR CALLS Saturday, CT shows NHL now 1% of before except for a little pleural effusion. GREAT NEWS (except now he has a kidney stone)
Oct 19 Sunday drenching sweats temp varies from 97 to 103
Oct 20 Mon 2x drenching sweats, gas pain. Very low BP, given 2 liters fluids outpatient clinic + 2 units blood
Oct 21 Tues Hohn catheter put in. Temp 104.9. sweats. Chemo of Ara-C + Adriamycin. Dr says to stop diflucan, restart Bactrim since sweats don't seem to be caused by allergy to it.
Oct 22 Wed 10am rigors. Then clinic day 2 of Ara-C chemo.+ 2 Liters of fluids for dehydration. Walking ok, minimal sweats. Dr. says start naprosyn 2x day for fevers. Thurs. minimal sweat, temp only goes to 102F, then 96
Oct 24 Friday 2 drenching night sweats, cough w/ yellow snots. Go to clinic, Dr says sinus infection so double bactrim, and double epogen dosage (4 weeks of use 3 x week had had no results). Very low BP. given 2 units of fuids and 3 units of blood (packed red cells).
Oct 25 Sat. NO sweats, slept well, given cough syrup, decongestant, + naprosyn
Oct 26 Sun - no fever, 2 night sweats, congestion, stuffy, feels lousy
Oct 27 Mon - 2 drenching night sweats, coughing, 4 day sweats, stuffy all day. 102.6F to 99F
Oct 28 Tues. woke up with coughing up yellow, wheeze, stuffed nose. Went in for regular weekly chemo appointment. Drs. order chest xray. They say it's pneumonia and admit him. No chemo today. Wbc is 0.2, plt 6 (BTW- LDH levels ALWAYS in normal range, there goes that theory). Given many antibiotics IV.
Oct 29 Wed. given platelets, respiratory therapy. wbc up to 0.3 and plt 11. Drs. say left lung pleural effusion due to infection?? lots of antibiotics IV.
Oct 30 Thurs. Drs. decide to remove large pleural effusion with chest tube. 2 Drs. can't get chest tube in. Moved to ICU. Chest Tube put in with CT assist. 660 cc. of yellow fluid drained out. Drs. do bronchoscopy to get samples of infection in left lung to determine which antibiotic to use. After Doug's feeling pretty good. Watching cartoons with private nurse. Pulmonary Dr. comes in and says it's draining well and he's "out of the woods." He's feeling so good I go home for the night and sleep.
Oct 31 Fri chest tube falls out on its own. He's Feeling really really good. He and nurse are really getting along (she's blonde). I remember it's Halloween and leave for an hour in the afternoon to leave candy out on porch. Cat seems to be missing. 5 p.m. His 2 doctors come in. Dr. Alan Yuen is crying. He sits on the edge of the bed. Says it's not pneumonia; never was an infection in his lung. Says it's lymphoma rapidly growing in left lung and starting in right lung.. Says no way to stop it. It's now in his spleen and blood. Doug says "Oh well. . " and looks at me. Blonde nurse cries and cries. Doug says can they try radiation, answer . . no . have they found a bone marrow donor, . . . no. . . . Asks them to think and try anything. Drs. tell him to get his things in order, he has 2 days to 2 weeks to live. He asks them what it will be like. They tell him they'll give him morphine when his breathing becomes more difficult and then he'll just take a last deep breath and then stop. They won't let him suffer. I call husband and Glen. Glen's home in 3 hours from Oregon.
Nov 1 Sat., a.m. 2 Drs. come in and say they've had a conference with all big-wigs at hosp. and UCSF. Going to try Ara-C, Taxol, + L'asparaginase. Never been used in combination before and so just guessing at dosage. Say it might kill him sooner. Move him to reg chemo floor since he does not need private nurse.
Nov 2 Sun. feels a little better. It's no longer in his blood. Give him transfusion. Lots of visitors. Lots of kids and teachers, one flies in from Wisconsin for 4 hours, 6th grade teacher comes, 9th grade teacher calls from MI. Uncle comes, 91 year old grandma comes. My sister comes from NY. Lots of chemo. Lots of stuffed animals. Given platelets, but body seems to be using them up too quickly.
Nov 3 Mon feels so weak, given transfusion, has allergic reaction of extreme rigors, chills and whole red body. Kids visiting step to side of room. Docs counteract with something or other. Can't eat. Dr says he needs closer matched single donor platelets. A dozen kids go over to blood bank to be tested. He feels claustrophobic, and we have to keep lights on and curtains open.
Nov 4 Tues. morning starts with 5 hour nosebleed. Finally stops. Given platelets. Lots of visitors. Afternoon begins another 5 hour nosebleed. More platelets. Evening he starts blowing huge clots out his nose. Starts to gag and can't breathe. I hit emergency button on wall and reach into his throat and pull out enormous clot blocking his airway. Finally nurses arrive and they call in ENT to pack his nose. More platelets and transfusion of red cells and plasma. Chemo is stopped. Drs. faces are so hard to look at, they turn away and won't make eye contact.
Nov 5 Wed. so weak, so tired. Can't eat or drink. Swelling from all the transfusions. Mouth sores. Drs. promised no more sticks, no more blood tests, no more needles, no more residents allowed in room except for one Doug liked. They asked which nurses he liked best. Have him on morphine with push button for demand. He asks us when he wants more and we push it. Evening visitors = best friends and asst. principal of high school. She tells Doug good news- she got his 2 theatre projects approved and found someone to produce his screen play "BackLight." Also, my cousin's daughter's new husband is a match for platelets, so his donation is given to Doug. He has a more restful evening but then whole night has trouble breathing.
Nov 6 Thursday. Nurse has been in and out all night. Doug has not been coherently conscious since 2 a.m. Opens his eyes but does not respond. Sits up and lies back down again, very restless. 7:45 a.m. 2 Drs. come in and say he's suffering. They remind me of what they promised him and what they told him it would be like. They tell me they have to increase the morphine so he won't be struggling for air. They tell me it's what they promised him. 7:55 a.m. they increase the morphine. He takes a few shallow breaths and stops
