Our Pancreatic Cancer Story
Every story has a beginning and our cancer story began in the summer of 2010. As the months have rolled along, we have made it through more than we ever thought possible. And we've also laughed and loved more than imaginable.
Mom's story is more than just a medical data transcript. It's our family journey down a scary, twisting road to an unknown destination. I began this website as a way to share her cancer story and offer hope to other pancreatic cancer patients and their families. But I never knew where the journey was going to take us.
When mom passed the dreaded 6-month mark, we took a time-out to celebrate. See Mom's Prognosis to understand the significance of the 6-month date. And it was about that time that I realized her cancer story was no longer just a "short" story, but rather a novel! Exciting news for any pancreatic cancer patient!
Each pancreatic cancer story is unique. This disease affects young and old, the wealthy and the poor, celebrities and nobodies. But each one must walk the journey laid out before them. In that, we are all so much alike, struggling with the same fears, decisions, and hopes as we take each step along the way.
We've put together this Cancer Timeline as a way to document mom's journey. And hopefully a way to encourage other pancreatic cancer patients. It's brief and to the point, everything in a nutshell.
The most recent updates will be here at the top.
It is an honor to have you join us on this journey.
OUR CANCER TIMELINE
OUR CANCER TIMELINE
December 10, 2011 Celebration of Life Memorial Service for Mom. Joy and Laughter, Tears and Prayers...
December 4, 2011 Mom passed away at 5:10am this morning. I was holding her hand when she took one breath, and then just never took another. There was no gasp, no struggle, just a blessed release. For mom, her Journey is complete. Her destination, an Ultimate Healing beyond anything we can imagine. For us, the Journey without her has just begun. There are no words...
December 3, 2011 Doctors gave her one more unit of platelets last night, but the numbers continue to drop. During the night, her heart started skipping beats and then beating erratically. Nurses kept a steady monitor on her through the night. Blood pressure briefly dipped to a low of 60/44 at one point. She is no longer lucid, and can only briefly respond to questions with a nod of her head or squeeze of her hand. Her body is shutting down, and her doctors finally agreed that there was nothing more they could do. Her wishes are paramount, and of this we have no doubt. At 10:00am we called in Season's Hospice and within an hour Suzanne had the transfer in progress. Mom was moved to a neighboring hospital, where they have a dedicated hospice floor and the nurses immediately began to make her comfortable. They were able to increase the morphine drip, give hourly injections of ativan (to help with anxiety/pain), and started a sublingual atropine drop under her tongue to lessen the fluid collecting in her respiratory tract. They also cleansed her hip, applied cooling compresses and finally a thick lidocaine-like cream. You could almost hear mom sigh and relax as that deep pain eased. The tension in her face disappeared and she truly looked like she was taking a well-deserved nap. Family filtered in and out throughout the day and into the evening. She roused only once when Steve arrived from Houston, acknowledging his presence. The family circle was now complete at her bedside. Around 10pm, she slipped even more deeply away from us and the rattling breathing began. Almost as if she was close to choking. I understand now why they call it the death rattle. It was hard to listen to, but the nurses assured us she was not in distress. They checked her oxygen levels and we were relieved to see they remained well above 90%. By 3:00am, her breathing had smoothed out, but was becoming very shallow and rapid. Her feet and legs gradually became cool to the touch and the nurses prepared us that her time was nearing. She was never alone. One of us was with her through the night. Holding vigil. Desparately praying for a peace that passes understanding...
December 2, 2011 Very restless night, mom has drifted in and out of deep sleep all day. She mumbles a lot and is having trouble with cognitive function, putting sentences together and focusing on questions. Nurses suspect this is a combination of the increased pain meds and low glucose levels. Even with the blood transfusions and dextrose added, her blood work is bottoming out. Platelets have dropped to 14. Her urine output is also dropping, and we have noticed a marked swelling in her abdomen, fluid retention. They have started her on lasix to try and reduce the swelling, but she is in obvious discomfort. Pain meds are at being given at the full dose allowed. With each report, we feel the floor giving way beneath our feet.
December 1, 2011 No improvement. Actually think she is getting weaker. Bloodwork about the same, but glucose is now dropping. Glucose level was 39, and they have started adding dextrose to her IV. Physical therapy came in for the normal morning exercises, but mom couldn't stand on her own. She became very faint and her heart rate shot up to over 160 (nurses came running to see what we were doing...) The pain in her hip has become excruciating. Dr. ordered a CT scan of hip and doppler ultrasound to check for a possible break that x-ray missed and/or a blood clot. Both were negative, but in doing the tests, it was obvious that the bruise had turned into something more sinister. Dr. believes she has a very serious case of cellulitis. The skin from her hip to her knee is very inflamed, red, hot and almost blistered. He ordered a wound care nurse to begin therapy with her. They added an air mattress under her sheets and air boots to keep her heels off the bed. Both made a marked improvement in mom's comfort. Nurses also offered to put in a catheter so she wouldn't have to get up to go to the bathroom, she readily accepted. She has slept almost continuously (when doctors, nurses and techs aren't messing with her.) After the wound care nurse left, mom spoke the words I had been dreading to hear for the past year. I think it's time to call hospice. Dad couldn't speak, simply couldn't bear it and had to leave the room. Tears swam, but she grasped my hand and held tight. Thankfully the morphine began to kick in and she drifted off. My heart was just breaking, but I also couldn't bear to see her in such pain. And Dad couldn't bear to give up. We spoke with the doctor and he suggested we give it another day or so to see if the antibiotics, dextrose and platelets can turn things around. I watch her sleep, and thank God for the peace-giving, pain-numbing narcotics that give her escape if even for just a few hours.
November 29, 2011 Again, she's about the same. Hemoglobin has come up to 10.0, which is very good, but WBC are only up to 2.0 and the platelets have dropped to 16, critically low. Gave her 1 unit of platelets. She feels wrung out, achy and feverish, dozed most of day. Chest x-ray this morning showed a slight improvement in her lungs, so we're hoping that's the start of a good trend...
November 28, 2011 About the same. Fever running around 100, still very weak. Hemoglobin has dropped to 6.7, gave her 2 units of blood. Oxygen level has been low and they have increased her O2 to 4L in order to keep saturation levels above 90%. Slept on and off all day. Added Vancomycin to antibiotic mix.
November 27, 2011 Very weak and still running fever. Took to ER in morning. Chest x-rays showed infiltrating pneumonia, both sides. Also her blood work had tanked. WBC was only 1.0 and platelets were only 25. Admitted and began antibiotics, fluids and platelet transfusion. Also started breathing treatments (bronchial dilators) to help break up congestion in chest. Complaining of hip pain, finally got it x-rayed late in the evening, no breaks, but very bruised.
November 26, 2011 Feeling weak and running low-grade fever. Possible chemo reaction, but not sure. Fell against the coffee table this morning and bruised her hip, very unsteady on her feet. Spent most of day in bed.
November 24, 2011 Thanksgiving Feast on the Farm! Put cancer woes, tumor marker worries, and chemo battles on the back burner for just this one day and enjoyed every minute with the whole family.
November 23, 2011 Round #2 Gemzar chemo in this cycle. Blood work was fine, EXCEPT for the tumor marker. It leapt up to 509. We are worried that the Gemzar may no longer be working, but Dr. Davis wants to finish this round and then will do a CT scan to check tumor growth. Thrush is almost gone, and weight is up to 120#, which is great, but the nurse cautioned that some of that is water weight gain from the steroids and swollen legs. Still all in all, holding steady.
November 17, 2011 Round #1 Gemzar chemo in this cycle. Blood work looking fairly good, but has another bad case of thrush in her mouth, has been nauseous and ishy all week. She's back on diflucan for the thrush, hopefully will take care of it for good this time
November 14, 2011 Physical therapy session. Worked on increasing stamina, leg strength and balance.
November 11, 2011 Home from vacation. Rested and happy. Some leg swelling and some increased heartburn, but overall feeling well.
November 4, 2011 Left for week long vacation to Lake Texoma with friends. Has been looking forward to this trip for several months. Here's to relaxing, laughing and forgetting all about cancer for the week!
November 3, 2011 Round #2 Gemzar chemo. Blood work looked fine. Platelet count was still great, well within normal ranges. Weight was also up, to 108#. Yea! Pain in upper rib cage was slightly improved. Nexium may be helping. However, she has developed thrush in her mouth and throat. Will be adding Diflucan to her medication list to combat this latest side effect.
November 2, 2011 Began physical therapy to help strengthen her legs and give her some added stability. Picked up wheelchair, but is determined not to use it until she has no choice.
October 27, 2011 Began Round #1 Gemzar chemo in this cycle. Platelets have rebounded well, all other blood work looks good, except tumor marker. It spiked 80 points to 362. Dr. wants to continue Gemzar another round and re-evaluate, may order CT scan or scope next week. Pain under rib-cage has become pretty intense at times, almost like acid-reflux. Doubled her nexium. Weight is holding steady, appetite is still strong, no vomiting.
October 20, 2011 Would have been Round #3 of Gemzar but platelets were too low (77). However, everything else was great. Weight was up to 105! Tumor marker was down to 282! No vomiting this week, nausea was very minimal. Just maybe the trend will continue! Dr. Davis gave her fluids, decadron and kytril. Mom did ask about getting some physical therapy - her legs are very weak and she's having to use the motorized carts when we take her to the grocery store. Dr thought physical therapy was a great idea, also put in an order for a wheelchair, for the times she may need it, but encouraged her not to use it unless absolutely necessary. Will start next cycle of chemo next week.
October 13, 2011 Round #2 of Gemzar in this cycle. Oral steroids and increased dose of marinol appear to be working. Mom felt the nausea was much reduced, no more vomiting and also more energy. Blood work today looked good too. Platelets actually went up from last week. Weight also went up! 101.0# Liking that trend. Will continue oral steroids this week, beginning the 3-day course on Sunday.
October 9, 2011 Felt fairly good last few days, but nausea has returned today and she's already vomited once. Began taking the 3-day course of oral steroids this morning. Will see how it works...
October 6, 2011 Positive News first: Tumor marker down to 301. Weight up to 98.8#! Last week's feasting worked, even with the last 2 days of vomiting. Also, Dr. Davis is pleased with how the Gemzar is holding the tumor to the pancreas, no spread. Yeah! Now to deal with nausea and vomiting. Today we started back on Gemzar and received our weekly round of fluids, steroids and Kytril. Mom was already feeling better by the time we left chemo lab. Doctor was also sending her home on oral steroids and a new anti-nausea med (compazine). And upping the Marinol to twice a day. Discussed j-tube. He is willing to go that route, but doesn't think we're there yet. Overall, very positive day.
October 5, 2011 Nausea and vomiting have returned with a vengenance. Nothing is staying down. Doctor appointment tomorrow. Need some answers.
October 3, 2011 Weekend went well, a little stronger each day. No vomiting, and even a small reprieve from the nausea. Go Steroids and Kytril! Cautiously optimistic that she's holding steady.
September 29, 2011 Not well, throwing up has increased in the last few days. Today was supposed to be Round #3 for the Gemzar, but her blood counts were too low. Platelets at an all time low of 74. She was given the fluids, steroids and anti-nausea drug, but no Gemzar. Felt better, a little stronger when we left doctor's office, but still weak. Weight is down to 96.8#. Discussed options. J-tube for nutrional support is possibility. Waiting on Tumor Marker results to see whether Gemzar is still working.
September 26, 2011 Nausea still a problem, but hasn't thrown up since last Thursday. Weight is holding steady, as is energy.
September 22, 2011 2nd round of this Gemzar cycle today. Platelets holding at normal levels, but RBC, WBC and Hemoglobin are dropping. Have had several good days with no nausea or vomiting, but started today out rough and lost breakfast before we left for chemo. Spoke with PA about possible Gastric Outlet Obstruction, she reviewed mom's EGD from 9-4-11, no apparent obstruction at that time and vomiting was ongoing before then. Weight at 101#. Will continue to monitor weight and nausea.
September 19, 2011 Medi-port implanted. Surgery went well. Still having trouble with nausea and vomiting. Weight down to 103#. Doctor doubled her dosage of Marinol in an effort to settle stomach and increase appetite.
September 15, 2011 Doctor visit. Blood work drawn, fairly stable, only RBC and HGB a little low. Tumor Marker is at 174. Weight 106#. Still having some nausea, has vomited twice in past several days, but decided to continue the Gemzar. Received 1st round in this Gemzar cycle today.
September 12, 2011 Doing well. Regaining more strength daily. Eating well. Marinol seems to be working well to control nausea and stimulate her appetite. Still on supplemental oxygen, but able to keep her O2 saturation up for short periods of time without the supplement, doctors think she may improve to the point of not needing it at all - we're hoping!
September 9, 2011 Discharged!
September 8, 2011 Much stronger today, on to a regular diet, however, the nausea is a problem. Doctors are adding Marinol to her drug regimen to help stimulate appetite and control nausea.
September 7, 2011 Mom is back! Fluids still running, she's eating better (on to full liquid diet, cream soups, jellos, pudding) and she's able to hold conversations, laugh and demand her morphine back for pain - good sign at this point, not the pain, but the demands!
September 6, 2011 Finally things are turning around. At 5am, they were able to get a PICC line started (for her iv). Fluids are rolling and helping move the sedatives out of her body. By evening, much improved. Doctors have her on a clear liquid diet at this point. Still no vomiting, reglan seems to be controlling that, but some nausea.
September 5, 2011 Extremely over-sedated. Almost to the point of being unable to wake up. Doctor has removed morphine and ativan. She has been on ativan as needed to help her sleep, ironically! Blood cultures are clear, no infection. Doctors think the high WBC was due to the mallory weiss tear. Have had lots of trouble keeping her iv running, she's lost two veins and have had 5 nurses attempting to restart. Not a good day.
September 4, 2011 Performed EGD this morning. Initial find is a mallory weiss tear in her esophagus. That explains the large volume of blood she threw up yesterday. But it is not the source of her vomiting, still waiting on doctor's report. Good news, she hasn't vomited since arriving at hospital. Doctors added iv Vancomycin to the antibiotic regimen. She is still very groggy and disoriented. We are becoming concerned about her cognitive function at this point.
September 3, 2011 Vomited huge amount of blood this morning, she is very weak and now has become disoriented. Back to the ER, admitted, back to room 588. Began on fluids and iv reglan. Blood work indicates another infection (or the same one coming back with a vengenance), WBC is 19. Hemoglobin is getting low at 9.2. She slept most of the day. Doctors started her back on cefepim iv antibiotic.
September 1, 2011 Still vomiting small amounts, feel like she's getting weaker, but she insists that she's alright. Unable to eat much more than a few sips of chicken broth at a time.
August 31, 2011 Home from the Hospital! Nausea is still a problem. Reglan has been prescribed. She's vomited twice today, but is thrilled to be back home. Now we wait and see how the recuperation goes.
August 29, 2011 Doctors feel the nausea and vomiting have been due to the strong antibiotics. This morning was the last I.V. dose. They hope her nausea will subside within the next 24 hours. She only vomited once this afternoon, so maybe, keep your fingers crossed, she's turning the corner. There is a slight chance she may get to go home tomorrow if nausea is under control and she's eating. Portable oxygen for home-use has been ordered for her. One other side note: ankle swelling is almost all gone!
August 28, 2011 Vomiting continues. I.V. fluids have been restarted. Mom is unable to keep any food or liquid down. Reglan and Zofran don't seem to be helping.
August 27, 2011 Had been feeling a little stronger each day, but took a nosedive this afternoon. Increased nausea. Began vomiting by nightfall. I.V. Reglan and Zofran started to try and stop the vomiting. One good bit of news, her lung x-ray is showing decreased fluid and no pneumonia.
August 25, 2011 I.V. fluids have been discontinued. Mom's blood counts have stabilized and she's eating well and drinking enough fluids. As a matter of fact, her weight yesterday was up to 123lbs. Much of that may be excess fluids, but hopefully some good weight gain. Lungs are still a problem, have not been able to wean off of supplemental oxygen at all. Sent for another chest x-ray this morning. Waiting on results. Pain under ribcage (tumor) has been inching up, doctor agreed to raising the MS Contin to 90mg at bedtime and 60 mg in morning. Seems to be working so far.
August 23, 2011 Medi-port is out. Surgery went well. On to clearing the lungs...
August 22, 2011 Good news. The TEE (trans-esophageal-echocardiogram) was performed this morning and results cleared the heart and heart valves! Big relief! Tomorrow doctors have decided to remove her medi-port, thinking it may be source of the bacteria, even though blood cultures on port have been negative. Lungs still have fluid, oxygen saturation is not good. Infectious disease doctor suspects pneumonia, will monitor.
August 20, 2011 Bacteria has been identified as Streptococcus Viridans. Bad bug. It can set up housekeeping in the lungs, heart or medi-port. Currently doing another round of tests to determine where it's hiding. More blood cultures, more chest x-rays, and will perform an echocardiogram on heart this coming Monday. She feels about the same. Not improved, but not worse. MS Contin 60 is keeping pain well under control.
August 18, 2011 Tumor Marker Results are in: 84! That is the lowest it has been since mom got her diagnosis. Very good news. But, the very bad news is that the infection in her body is getting worse. This morning's chest x-rays indicated fluid building in both lungs. Dr. has ordered chest ct scan and called in an infectious disease specialist. Mom's energy level and strength are rapidly deteriorating.
August 17, 2011 Blood culture came back with a preliminary result of gram-positive cocci bacilli infection. Chest x-rays indicate a hazy patch in her right lung, possibly beginning of pneumonia, but too early to tell. Doctor ordered a stronger antibiotic, Vancomycin, to be added to the mix. Blood pressure has come up to low normal, but oxygen saturation dropped to 80% overnight, when the oxygen tubing slipped off her. In her words, she feels like crap. And that pretty much sums up this day.
August 16, 2011 Given blood transfusion to help bring up hemoglobin and red blood cells. This should also give her a little more energy. The White Blood Cells are still high, indicating infection. They ran blood cultures, but results take at least 24 hours, so they are starting her on an i.v. antibiotic as a precaution. Even with the blood transfusion she is listless and having trouble with blood pressure and oxygen saturation. Doctor reduced her MS Contin from 90mg to 60mg because she appeared "snowy," his words. We are hoping that will help with her extreme weakness.
August 15, 2011 Bottom dropped out on mom this weekend. Weakness became insurmountable and when she tried to get out of bed this morning, she couldn't. Took her immediately to the Emergency Room. Blood counts are off. Both her Red Blood Cells and Hemoglobin are very low, and her White Blood Cell count is extremely high. Blood pressure was down to 80/50 and her oxygen saturation was running around 85%, neither is good. They admitted her, started fluids and oxygen, and began running a battery of tests.
August 11, 2011 Week off from Gemzar treatment. Usually mom goes in for the fluids, Kytril and Decadron, but didn't go this week. She hasn't been experiencing much nausea, just a continuing weakness and tiredness.
August 4, 2011 3rd round in this Gemzar cycle. Again, no flu-like malaise. But mental cloudiness has increased. Not sure if it's the morphine, the lower Hemoglobin counts or the beginnings of Chemo Brain. She's considering dropping the MS Contin back again, but fears the pain. Will keep it at 90mg for now.
July 28, 2011 2nd round in this Gemzar cycle. Flu-like symptoms have not been so bad this week. Only real complaint has been a slight feeling of grogginess, mental fuzziness, etc. She dropped back on the MS Contin from 120mg to 90mg, and that seems to be keeping pain in check.
July 21, 2011 Happy 71st Birthday Mom! And what a present: Chemo! Not fair. But she's pushing through. Blood work showed her platelets had rebounded bigtime, they're up to 696. Other levels are ok. Biggest Gift was her tumor marker! It's down to 174! Hallelujah! Gemzar is working. So onto chemo again. This is her 1st dose in this Gemzar cycle. Talked with her doctor about starting the BarleyLife supplement and he was fine with that. Will begin today. We're keeping track of her experience with BarleyLife here. Weight is at 106.8lbs. Not great, but at least not losing more. Megace seems to be holding her steady. Left ankle is still swollen, but doctor just wants to watch. Believes it's just a side-effect of the cancer/chemo combination. Will prescribe diuretics if it gets too bad, but ok for now.
July 15, 2011 Week off from Gemzar treatment, but still went in for fluids, Kytril and Decadron (for anti-nausea and anti-inflammatory benefit). Has had a lousy week. Strong flu-like malaise. Blames part of that on trying to back off the morphine. She went from the MS Contin 90mg to 75mg and the pain intensified quite a bit. She went back to the 90mg after 2 days, and then up to 120mg to get relief.
July 11-14, 2011 Mom and Dad fly out to Wendover, NV for some R&R with friends.
July 8, 2011 Doppler sonogram of mom's left ankle to check for a blood clot. Ankle is still swollen and slightly discolored. Sonogram was negative for blood clot.
July 7, 2011 3rd treatment in this Gemzar cycle. Blood counts are all very low. WBC-4.0, RBC-3.44, HGB-10.6 and Platelets-98. Mom's oncologist was on vacation and the PA and nurses debated at length on whether to proceed with the Gemzar. Her low platelet count was of primary concern, as they worried she may begin to bleed internally. However, the NADR (low point in Gemzar chemo) is usually 10-14 days, so they are optimistic that mom's counts are as low as they are going to go. So, Gemzar was given. Mom has experienced the usual Gemzar malaise: low grade fever, chills, muscle aches. These begin about 2 days after the chemo is given and last roughly 72 hours.
July 5, 2011 Left ankle has swollen up again over the weekend, and is turning a suspicious shade of red, slight pain in achilles heel area. Appointment with family doctor. No definitive diagnosis, possibly cellulitis, but not sure. Doctor prescribed antibiotics and will watch. Keeping leg elevated as much as possible.
June 30, 2011 2nd treatment in this Gemzar cycle. Blood counts are dropping, but are still within low-normal range. The Megace medication does seem to be working. Mom's appetite was good all last week, and her nausea was minimal.
June 24, 2011 Oncologist visit. Check-up, blood drawn, and next round of Gemzar chemo started. Tumor Marker is up to 630, not good. Weight was 109lbs. Doctor wants to try her on a new medication to stimulate her appetite. It's called Megace and is also used to alleviate nausea. Good thing, because her stomach was churning even before the chemo began.
June 14, 2011 2 week check up with surgeon. Doctor is very pleased with her progress. Pain is easing, appetite is better and energy is up. Mom tried to reduce the MS Contin to 60mg in morning and 90mg at night, but found the pain was not well controlled, so she's continuing on the 90mg morning and night. However, she has reduced the hyrdocodon from every 4 hours to just as needed, which is generally only once or twice during day. Pathology report: "Severe acute and chronic cholecystitis with intramural microabscess formation, mural fibrosis, and acute fibrinous serosal exudate." Translation: Very badly infected gall bladder, and has been for quite a while! Surgeon released her back into care of her primary and oncology doctors.
June 1, 2011 Discharged and recovering at home. Feeling a little stronger each day. However, after the fluid retention resolved, her true weight came in at 104lbs. Not Good. Have to get that weight stabilized and moving up.
May 31, 2011 Removed drain. Much better. Walking around hospital floor and eating solid foods.
May 28-31, 2011 Recovery in the hospital. Very painful, quite a bit of drainage. Doctor increased her MS Contin to 90mg. Hopes to be able to reduce that back once she's healed from surgery. Eating a little better now that gall bladder is out. Weight up to 111 lbs.
May 27, 2011 Gall Bladder Surgery began at 7:20pm. Surgeon was able to do it laparoscopically, but said the gall bladder was completely rotten. It had swollen and had adhered to her small intestine and other internal organs. He was only able to remove about 90% and had to leave a drain in her abdomen to suction off infection and bile.
May 26, 2011 Pain shot off the charts early this morning. Mom knew something was wrong, got to ER around 11am. Bloodwork, CT scan and they finally had a diagnosis. Severly inflamed gall bladder. Surgery scheduled for late tonight or tomorrow. Admitted her and started fluids and also started her on Zosyn, a good, strong, i.v. antibiotic.
May 25, 2011 Fever up to 101.7 this morning. Pain still big problem, getting progressively worse all day. Not able to eat anything but some broth.
May 24, 2011 ERCP to check stents, sedated for procedure, day surgery. Stents are not blocked, but doctor did feel something pressing on the colon. He suspects a possible tumor, but could not be sure. (See May 26, 2011 for the "good" news - it's not a tumor!) She's still running low grade fever. Weight down to 108 lbs.
May 17, 2011 Called doctor with her symptoms and he had her come in for blood work. Not anything out of the norm, but because she wasn't feeling well, he decided to hold off on the Gemzar cycle that was supposed to start tomorrow. Wants the gastroenterologist to check her stents and make sure they aren't occluded again. Gave her fluids, Kytriol and Decadron and also started her on Augmentin antibiotic. But there's some good news: her tumor marker has dropped again to 118!!!!
May 14-17, 2011 Began running low grade temp, got up to 101 on several occasions.. Absolutely no appetite, complained that it hurt to eat. Pain getting worse. Generally feeling lousy.
May 12, 2011 4th week of chemo cycle. No Gemzar, but due to mom's generally run-down appearance, doctor ordered an infusion of fluids and the pre-chemo meds, to help boost her body. Also increased the MS Contin to 60mg twice a day for pain. That doubles her previous dose.
May 6-10, 2011 Very bad fatigue and flu-like symptoms.
May 4, 2011 Gemzar chemo infusion with pre-chemo meds.
April 29-May 1, 2011 General crummy feeling, no appetite, fatigued, more abdominal pain under ribcage.
April 27, 2011 Gemzar chemo infusion with pre-chemo meds.
April 26, 2011 Routine follow-up CT scan for the radiation oncologist. Good results. Tumor does not appear to have grown and looks scarred, meaning many of the tumor cells have died.
April 20, 2011 Began next round of chemo. Doctor decided to try the Gemzar, without the Tarceva. Will do 3 weekly infusions of Gemzar with one week off. Gives pre-chemo meds first, Kytriol and Decadron for nausea and inflamation. Weight down to 118 lbs.
April 19, 2011 Bloodwork. Tumor Marker down to 234!!! Yipee!!
April 12-14, 2011 Quick trip to Minnesota to visit mom's brother and his wife who are both in very ill health themselves. Mom has been wanting to go and finally decided that this was her window of opportunity before the next round of chemo. The visit was great, although mom was more exhausted than she expected.
March 22 - mid April, 2011 It has taken mom almost 3 full weeks to recover from the horrible side effects of the radiation and chemo. Vomiting, nausea, fatigue, mouth sores. It's been a bad 3 weeks. But starting to feel better by middle of April.
March 23, 2011 Removed continuous 5-FU pump. Yea! Can finally take a shower!
March 22, 2011 Last day of Radiation Treatment. Hallelujah! Barely made it to the toilet.
March 21-22, 2011 Intense Radiation Treatment.
March 18, 2011 Begin intense Radiation focus on the tumor for the last 3 radiation treatments.
March 3, 2011 Resumed Continuous 5-FU Chemo Pump. Bloodwork: Tumor Marker coming down!! It's 694!!
March 2, 2011 Resumed weekly Radiation Treatments.
February 23-28, 2011 Katie and Jordan's Wedding Cruise! Mom got to be there for her granddaugher's wedding. What a joyous event!!! The relaxation, and the rest from treatment, good food, great company, and happy occasion all seemed to do mom wonders. She felt great by the time we returned and had actually gained 3 lbs. Weight up to 121 lbs.
February 21-23, 2011 Daily Radiation Treatments. Short week - tomorrow we leave for Katie's Wedding Cruise. The doctors have given mom a 5-day weekend free from radiation to go on the cruise!
February 18, 2011 Mouth sores much worse and now very nauseous, can't eat. Doctor removed the 5-FU pump and wants to give it a rest. But continue with Radiation Therapy. Bloodwork, most is in normal ranges, but tumor marker is at all time high of 1476. Ugh!!
February 17, 2011 Mouth sores getting worse, called doctor. He ordered Miracle Mouthwash and wants to see her tomorrow.
February 15, 2011 Still queasy and fatigued and now noticed small mouth sores on lower lip.
February 14-18, 2011 Daily Radiation Treatments.
February 9, 2011 Started feeling queasy, has to eat small meals to keep stomach calm.
February 7-11, 2011 Daily Radiation Treatments.
February 7, 2011 1st Radiation Treatment. Also was the day mom switched oncologists. She chose to use the doctor with whom she had gotten the second opinion. After the radiation therapy (we could still use the radiation oncologist as he was in another practice from the first oncologist), we drove down to his office and got started with bloodwork and then outfitted for the continuous 5-FU chemo pump that will go along with her radiation therapy.
January 28, 2011 X-rays for the radiation therapy mapping and also given 3 tattoos on her abdomen for mapspotting.
January 27, 2011 Released from hospital. Continue with Miralax, Konsyl and also add Colase stool softners to the regimen. Weight down to 118lbs.
January 26, 2011 Constipation has caused an impaction. Doctor ordered her back to hospital to treat with enemas and fluids. Also gave a botox injection into the fissure to help reduce it. Very miserable.
January 24, 2011 Fissure has gotten worse, now also has constipation from so much pain medication. Miserable.
January 22-23, 2011 Pain much worse after insertion of the metal stent (found out later that metal stents are slightly larger in diameter than the plastic and cause painful spasming of the duct). Mom took up to the maximum on all her pain meds.
January 21, 2011 Back in hospital for day surgery to have the plastic stent replaced with metal stent. Hopefully the metal stent will last much longer and not get occluded.
January 14, 2011 Developed an anal fissure, very painful, went to a rectal and colon surgeon. He gave her a cream, with lidocaine and cortisone, to use in hopes of reducing it. And also put mom on Metamucil, Miralax and Konsyl.
January 13, 2011 Went for 2nd opinion appointment with an oncologist that mom had worked with before she had retired from nursing. Liked him very much, but downside is the longer drive to his office (one hour). Also began mapping for the radiation therapy, this was a CT scan with contrast and barium.
January 11, 2011 Appointment with oncologist, he has decided not to use the Gemzar again at this point, still feels it caused liver problems. He is sending mom over to the radiation oncologist today to begin radiation therapy. Met with radiation oncologist and discussed his treatment plan.
January 10, 2011 Bloodwork drawn. Everything is back within normal ranges.
First week of January, 2011 Had several phone conversations with oncologist. He still feels Gemzar may have been responsible for high liver enzymes, does not want to continue. Gastroenterologist is convinced it was the stent.
January 1, 2011 Happy New year! Celebrated with chicken broth. Yea!
December 31, 2010 Released from hospital. Weight down to 122lbs.
December 30, 2010 ERCP under sedation. Common bile duct stent is completely occluded. Replaced it with another plastic stent. Clogged stent was cause of fever, the increased pain and high liver enzymes.
December 29, 2010 Still hospitalized, very miserable, abdominal pain becoming intense. I.V. fluids, not eating.
December 28, 2010 Spiked high fever of 104.1, taken to ER and admitted. Chest x-rays are clear, no pneumonia, but bloodwork is not good, very elevated liver enzymes. Oncologist puts a halt to further Gemzar/Tarceva chemo and calls in gastroenterologist for consult.
December 25-27, 2010 Flu-like symptoms, coming and going, but generally feels like crap.
December 25, 2010 Merry Christmas!
December 24, 2010 Beginning of low grade fever, achy, fatigued, no appetite, slightly nauseous. Just in time for Christmas - blahhh!
December 22, 2010 Weekly Gemzar infusion, with the Kytriol and Decadron.
December 18-21, 2010 Mild reaction to the chemo, achy, a little nauseous, fatigued, generally flu-like for several days.
December 17, 2010 Began the once daily dose of Tarceva, chemo drug used in conjunction with the Gemzar.
December 15, 2010 Began Gemzar Chemotherapy. Will have this once weekly, in the oncologist's office. Given 2 pre-chemo medications i.v., Kytriol and Decadron, one for nausea and one for inflamation. Also put mom on MS Contin 15 mg every 12 hours for pain with a prescription for hydrocodon for break-thru pain. The MS Contin 15 wasn't enough, so after a week he increased it to 30 mg twice a day and that relieved most of her pain.
December 14, 2010 Bloodwork drawn and met with oncologist's nurse to have "Chemo Education." Shirley discussed all possible side effects and what to do for each.
November 24, 2010 Medi-Port placed in a main vein under mom's right collarbone. Sedated for procedure.
November 23, 2010 CT Scan of abdomen to determine extent of tumor and possible spread. Good news/bad news: seems to be confined to pancreas, no spread, but wraps around/invades portal vein making it inoperable. Terminal.
November 22, 2010 Consult with surgeon about having a medi-port inserted to make chemotherapy easier.
November 19, 2010 Consult with Oncologist.
November 16, 2010 Biopsy. Sedated for procedure. Officially diagnosed with Pancreatic Cancer, Adenocarcinoma.
November 4, 2010 ERCP, Endoscopic retrograde cholangiopancreatography as an outpatient. Sedated for procedure. Doctor found mass pressing against her pancreatic and common bile duct. He inserted stents into this ducts to relieve pressure and referred her to a specialist for biopsy of mass.
November 2, 2010 Gallbladder Ultrasound. Negative for gallstones.
November 1, 2010 Appointment with gastroenterologist. Beginning signs of jaundice, stools were turning clay-colored, as well as pain and unwellness. He took one look at her and began ordering all kinds of tests, bloodwork, ultrasound and ERCP. CA 19-9, tumor marker was elevated at 404 (normal is 0-35).
Late September 2010 Getting worse. Worsening indigestion, definite pain under ribcage when breathing deep or twisting to the side. Mom took matters into her own hands and called a gastroenterologist for an appointment thinking it might be her gallbladder. They couldn't get her in until Nov. 1st.
September 9, 2010 Appointment with family doctor. Bloodwork was fine. No signs of apparent illness. Gave her perscription for stronger antacid. Weight 132lbs.
August 2010 Indigestion increasing. Vague feeling of unwellness, maybe bloating, uncomfortable feeling under ribcage, not really pain, but not normal either.
July 2010 Mom began noticing increased indigestion. Over the counter antacids didn't seem to help much.