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GAIL LYSIAK


Gail Lysiak’s story – a 49 year old paraprofessional at Spencerport Schools in upstate NY, for the last 7 years.

Picture of Gail
During winter break, 2006, Gail had, what she thought was a bad flu. Very weak, totally exhausted, felt sick for about a week. No temperature, no stomach related distress, just very weak. She recovered, slowly over the next month, except for slight feeling of, what she thought might be constipation. An ache under the breastbone, towards her back continued to bother her. After her doctor and her tried a few things, thinking it was acid reflux, or something similar, she had an ultrasound. It showed a slight enlargement of the pancreas. The doctor ordered a blood test, which was inconclusive. The doctor immediately scheduled her for a CT scan to further investigate. The CT scan was completed on Monday afternoon, May 1st. Gail was told it takes a few days to get the results, and write up a report, it would be transmitted to her doctor. Gail was surprised to find a message from the doctor on the answering machine, when she returned home from the CT scan. Please come and see the doctor tomorrow, before hours, to discuss the results of the CT scan.

The results were very bad. There was a 3 x 4 cm tumor in the pancreas. The doctor said, she had to assume the worse at this point, that it may be pancreatic cancer.

She had scheduled an appointment at 12:30 that day, with a surgeon, who is experienced in pancreatic cancer surgeries. Gail’s doctor considered him to be a very aggressive surgeon, if there was a chance to remove it (called a Whipple procedure, the only possible curative treatment), he would try. Gail hand carried the CT scans to him, had a physical exam, and was told, bluntly, it is non-operable. The tumor was wrapped around the Superior Mesenteric artery and vein, which by definition made it inoperable. Gail asked, “How long?” The answer was six months, maybe twelve months with aggressive treatment. He immediately referred Gail to an oncologist, later in the week. This was the start of a series of second opinions from some well credentialed Rochester doctors to NYC Memorial Sloan Kettering, a national recognized cancer center, who have specialists who concentrate in only pancreatic cancer. The biopsy samples were sent to Sloan Kettering in NYC, they verify it to be adenocarcinoma – the deadly cancer. Sloan Kettering’s Dr Veach stated that the best 1st line treatment for Gail was to pursue the standard chemoradation therapy suggested by the Rochester doctors. Clinical trials would still be a possibility as a 2nd line treatment.

Meanwhile, Gail’s pain had been getting progressively worse over these two weeks of second opinions and emotional roller coater rides. Rather than go to Johns Hopkins and get a 4th opinion we decided to immediately start treatment in Rochester. Wednesday, we were in New York City at Sloan Kettering, on Thursday/Friday, we were in Rochester, completing preparation for treatments. Her Rochester oncologist and radiologist prepared (which usually takes about two weeks to generate the dosage, set up, etc. for radiation) to start treatment on Monday, with a dry run and check. Then on Tuesday, May 23rd, both chemo and radiation treatments started.

Five weeks of daily radiation, including, the first 4 days of 5FU chemo, and the last 4 days of 5FU chemo. Gail body did not take kindly to the chemo, nausea, weakness, anxiety, losing more weight all followed the chemoradiation treatment.

The following three weeks, the digestive issues were even worse. She was told after 3 weeks, her body would heal from the damage the radiation caused. June 27th was her last chemoradiation treatment, it was August 1st before she could convince her regular physician, that she needed enzymes to aid in her digestion. We didn’t know whether the cancer or the chemoradiation had caused it, but her body could not absorb nutrients anymore, everything was going through her, everyday, and she continued to lose weight. Totally unpredictable vomiting, diarrhea, nausea were the norm at this point. Gail questioned whether she would ever be able to leave the house again, much less return to school to continue to work as a school aid. She was determined to make a trip to California, to attend our nephew’s wedding. Once she started to use the prescribed enzymes, within 3 days her digestion settled down. By the second week in August, we were sure that we would be traveling to California August 17th. After the trip, Gail decided to try and return to work, no matter how weak or bad she felt. Laying on the couch, watching TV, waiting to die, just was not acceptable.

At this point, Gail had started chemotherapy, under the care of the Lipson Cancer Center’s Dr Kramer. He is a compassionate, caring doctor who really knows his oncology. Gail really felt comfortable with him. Unfortunately, pancreatic cancer was not one of his strengths. After much research, I had found an oncologist at Wilmot Cancer Center, part of Strong Memorial Hospital, who was involved in pancreatic cancer research.

We made an appointment with him and his team, and we decided that we should change to his care. He offered some hope. He stated, after 3 months of chemo, we shall evaluate our surgical options. If not possible then, we will do three more months and evaluate again. We will continue until we have that option. We understood that if the chemo became ineffective, that plan certainly doesn’t work. However, he offered hope. Immediately, he added Tarceva to Gail’s chemo treatment plan.

From the end of August to the end of December, were filled with weekly chemo treatments, weakness, nausea, and all the other unmentionable digestive issues. The appointments were scheduled on Friday afternoons, so that Gail could work, and miss only a few hours a week (not counting sick days she had to take due to the side effects a some points). She fought through the low platelet counts, the low white blood counts, the potential of catching a common illness, that combined with the other issues, could be fatal. This was an exhausting journey, which seemed it could end in only one way. I kept researching, following newsgroups, looking for more information of new treatments and clinical trials. The statistics just kept popping up at the worst times. The most lethal cancer, 3-4% combined survival rate after five years. Inoperable – 0% alive after 3 years. After these seven months, all the horror stories about surgery, I had heard, could not be worse than what we had lived. We had an appointment with Dr Schoeniger, for evaluation of curative surgery. The Whipple surgery. Needless to say, the anxiety level was tremendous.

We naively thought we would have an answer at our first appointment. After many questions, etc., the doctor came in and cautiously told us, he did not know yet what his decision would be. The CT scan was ambiguous, it was very hard to tell where the scar tissue ended, the tumor started, etc. He wanted Gail to get a PET scan. This would help. After some argument with the insurance company, Gail submitted to the PET Scan. Radioactive isotopes are injected into Gail while she is in, what is physically similar to a CT Scan machine. Any active cancer tends to absorb the isotopes quickly, glowing on the screen. The technician performing the test, mentioned, that everything seems to look good. She is not “Lighting up”.

The test results were sent to Dr Schoeniger, for him and his team to study it. We scheduled another appointment. He sat down with Gail and I and explained the results. He prefaced the conversation with the warning that this type of surgery is major, dangerous with a long recovery. After some conversation, Gail lost her patience (expecting another refusal to operate) and blurted out, ”Will you do the surgery?” The answer – Yes. He offered the option, that things look so good, perhaps we could take a wait and see approach. Gail answer – No, not with what we know of this disease. We have a chance at a cure, I want to take it.

Further discussion with the doctor, her prognostic factors, don’t look good – they look great. Her young age is another benefit. The 20 previous vein involvement whipples he has done, all have been in their late 60’s to early 70’s. His plan is to have the chief of vascular surgery do the vein/artery resections and him the Whipple surgery. He mentioned, sometimes a second procedure is needed. He declined to elaborate on that.

The date was arranged, March 22nd, 2007. It was about 5 weeks off, everybody wanted to do it a little earlier, however, finding time on the two surgeons schedules was not easy. We went through all the pre-operation testing and preparation. Gail was off chemo for these five weeks, and felt great. She was out cross-country skiing, shopping, preparing her personal life for the time she would be out of commission. At that point, we noticed how much muscle mass she had loss over the time she was in treatment. The chemo does things to your body, that over time, results in loss of muscle mass. Gail’s oncologist mentioned he thought that the chemo was taking its toll on her body before the surgical consult.

Up until this point, neither of us had allowed ourselves the to think of the possibility of a successful Whipple surgery. The anticipation was extremely difficult. Anything could happen going forward. Both good and bad possibilities. From not being able to perform the surgery, to complications, to the possibility of death on the operating table, to a short reprieve from the disease, to completely cured. Every possible thought ran through our heads.

A blow by blow description of the surgery:

The March 22nd surgery details: o       8:00 AM – Check in, pre-surgerical preparation, pre anesthetic staging. Surgeons decided against a spinal epidural, due to the vascular involvement.

o       10:00 AM - Wheeled into the operating room

o       11:00 AM – Head nurse calls with update – will be updating about every 2 hours. First cut at 10:45, Gail is doing well.

o       1:00 PM – First part of the surgery is a small incision and a careful exploration of the whole peritoneal cavity, looking for any spread. Everything is, as the imaging had indicated, no spread. The procedure will continue. A much larger incision is made. Gail is stable and doing well.

o       3:00 PM – Update by nurse, Gail is doing well; Dr Schoeniger is doing the first part of the Whipple procedure. A new head nurse will be taking over at 4:00 PM

o       5:00 PM – The vascular surgeon has successfully completed the vein resection. Things went well. It does not mean we are anywhere near done, much still to be done.

o       7:00 PM – No call for update

o       8:15 PM – The family waiting center person calls to the operating room for an update. Patient’s family getting very stressed out. Nurse call back – Gail is doing fine. Dr Schoeniger is continuing the Whipple procedure.

o       9:15 PM – Family waiting area is closed, moved to the main lobby. We have outlasted all the families, except for one who arrived in the afternoon. We get a call from the vascular surgeon in the main lobby, “We are just about finished.” That was the whole message. Do not know what happened to the head nurse.

o       10:00 PM – Nothing

o       11:00 PM – Nothing

o       12:00 PM – Dr Schoeniger approaches us (Kristin and me) in the lobby, and has a conference. He tried to explain in layman’s terms what has happened. Gail is OK; the surgery was a complete success. There was no involvement of the Superior Mesenteric Artery, it was not touched. However, the SMV, and two closely related veins were resected. Without going into the details, the swelling is substantial, and she cannot be closed up at this time. What is called a “Vacuum Dressing” is placed over the area, she will be heavily sedated until the swelling goes done sufficiently, then we will have another procedure to check things out and sew up the abdominal wall. Her lungs, heart and kidney were checked out, everything is still functioning.

o       12:30 AM – We find our way to the Intensive Care Unit, where she has been sent. Actually, we beat Gail to the ICU, and ended up waiting in the waiting area for 15 minutes, while they brought Gail up. Never having been in an ICU, I really didn’t expect to be so shocked, emotionally and totally overwhelmed. Kristin, quickly, found a chair to sit in and put her head down. I stood there, looking at her, pretty much in shock. The nurse quickly started filling me in on the details. She is doing very; very well, this is to be expected after a surgery like that. Not unusual. I looked at the blanket over her abdomen; it looked like somebody had put a basketball there. The thought of it being an open dressing did wonders for my digestion. I wanted to hold her hand and say good night, but her hand was physically buried under tubes, probes IV’s, guards. I settled for a goodnight, I would be back tomorrow. At that point, it is graphically illustrated, what a heroic effort was just performed. I later found out, over 30 liters of fluid (blood, saline, etc) were pumped into her, little of it drains during the surgery. Now in the ICU there were drains all over, tubes, IV’s, ventilator, probes, sensors, on and on. I also found out later, Dr Schoeniger felt he had all negative margins, the tissue would go through the pathology lab to confirm, but he felt confident he got “it” all.

o       1:00 AM – Kristin and I, head home, while making some update phone calls. I am not sure, at that point, how the calls were received. The surgery was a success. Recovery is now starting. It will be a little longer than predicted, but not unusual. Not being able to close up is a little un-nerving, but the doctor mentioned, to Gail and I, that this may happen. He did not go into detail about it; just saying a second procedure is sometimes needed. She will be aware, but under heavy sedation in the ICU.

o       Friday 12:00 Noon – After a good night’s sleep, a sunny day, Kristin and I return to see Gail. She looks remarkably better, the basketball missing, her face half as big, good color, sleeping quietly. The nurse told me she was aware of what was happening, just hard to respond. Therefore, I started to talk to her. First, her eyebrow went up. The she struggled to get her eyes open. Then she seemed to kind of wake up a little more. Asked the nurse to come in, she asked Gail if she was in pain, she nodded yes, so they upped the pain medication. She calmed down, seemed OK, and fell back asleep. After a while, I left to make some phone calls, leaving Kristin alone with Gail. Gail pretty much wakes up now, and starts to move hers arms, instinctively trying to pull the tubes out of her airway. Kristin goes running off to get the nurse. (Usually, she is right there next to the bay.) She quickly ups the sleeping drug (Propofol), until Gail settles down. I was not there, but I am guessing Kristin was in the corner whimpering at this point. Cannot say I blame her.

o       Saturday 11:00 AM – Bethany and Scott come up to visit, Kristin and I arrived. The head of the ICU unit comes in and suggests we remove the incubating tube, it would be healthier, and she could talk (seeing everybody there, he must have thought it was a party). Sooo, the sleepy medicine was shut off, the pain medication was shut off, and allowed to wear off, so that they could ensure Gail could breath in a strong enough fashion. OK, so looking back, that was not that good an idea. As Gail started to come out of her drug-induced fog, she went into an emotional panic. Of course the last thing she was told was, the tubes would be out, when she wakes up. Now she is waking up on a ventilator, started feeling her stomach, surprisingly claimed she was not in pain (she cannot talk, only nod her head). She wanted badly to tell us something but could not, then started crying. I explained to her that everything was OK, and the surgery was a success. I can tell by her eyes, she did not believe me. She wanted a pad of paper and pencil; she tried to write something, but only could scribble. At this point, the nurse quickly started up the sleepy medicine and pain medicine, immediately Gail fell asleep. OK, we are going to stick with the original plan, deeply sedated, with pain medication (and all the other IV’s) then Monday they will complete the surgery and close things up. Then Gail can wake up, and we can explain the details. The surgery was a success, margins negative, excellent prognosis factors. It was more complicated than thought, but two very determined surgeons found a way to get the outcome they wanted. They are truly in the elite of the elite in their field.

- March 27th, 2007 Tuesday 8:00 AM Monday, they completed the surgery – “Zipping” her up. Dr Schoeniger did an inspection before doing the zipping. The three veins resected are perfect; the plumbing he did is perfect and healing, no damage to the other internal organs in the area. To support the inspection, Gail’s kidneys are kicking into high gear, producing a lot of urine. This is a sign; her body is taking over the healing process. As usual, drama everyday, but overall, things are going well. I have a better understanding why Whipple patients spend time in the ICU, as standard procedure. Gail is not awake yet, to the frustration of the respiratory people. For the zipping up, they gave Gail a large amount of Fentanyl, plus the Propofol, to make sure she felt nothing. To take the respirator tubes out of her throat, she really should be somewhat awake and exhibit a gagging reflex. Well, yesterday, her numbers were great, she is breathing on her own now, but she really likes it in happy land. The Fentanyl and Propofol IV’s were off for 5 hours and she did not want to wake up, stirring around, but not conscience and no gag reflex. Before that, everything was cut way down, expecting her to wake up. Finally, at 9:00 last night, they gave her a different painkiller, and said we will work on this tomorrow. She has just decided sleeping is better than getting the tubes out.

Bottom Line, Gail is progressing very well. Hopefully, today or tomorrow, she will be transferred to a regular floor room, and even more important, will be able to talk again, so she can tell us of any pain or problems. - March 28th, 2007 Wednesday 9:00 PM After many nerve racking hours, Gail is totally out of sedation, conscience and knows she is in pain. They are working on the pain part. She has been transferred out of the ICU down to the sixth floor. She is very weak; she cannot even grasp a spoon to bring it to her mouth right now. The six days of sedation has resulted in her being very weak at this point, apparently that is very normal. The surgery is officially completed. Yey!!

April 4th, 2007 Wednesday The Eagle has landed! Gail is home – she is sleeping in her quiet, warm, living room. Nobody is poking her with a needle, taking her blood pressure, taking her blood sugar, or other vitals. Nobody is crying, swearing, screaming or groaning in the bed next to her (yes, we asked for a private room – just are not enough of them). The nurses were fantastic, caring and technically sharp. However, after 14 days, it is definitely nice to be home. Gail is still working through her body absorbing the excess liquid being produced by her wounds.

This brings me to this particular day, Monday, April 16th, 2007. Gail is slowly recovering, eating a little more, walking a little further, taking less pain medications each day. Whatever we are faced with, we feel we can deal with and make the best of it. How long we will be on earth, who knows? Will she have some issues and problems due to the surgery – probably. Is it better than where we were a few months ago – YES! YES! YES!

There were times Gail wanted to give up, she could not stand the emotional pain she was causing so many other people, especially her immediate family. She managed to push on, and perhaps got very lucky. Or perhaps things are changing in this field, so that armed with knowledge, there is, at least, a much better chance today at survival, than there was yesterday. Hopefully, in the coming years there will be breakthroughs in treatments. There are many dedicated people working to this end.


Posted 04/16/2007 06:48 pm by palysiak
E-mail Address: plysiak@rochester.rr.com

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