I just left behind a beautiful scene, Faina snuggled in bed, sandwiched in between Margo and Jamie, giving an account of the past two days. She started a new cycle of chemo today and is carrying the pump pack for the 46 hours of fluorouricil (5-FU). It is a little after 9:00 pm and we just returned from an appointment with Dr. Gertner. Margo once again took care of the TPN so at the moment, Faina has chemo flowing into her right arm and nutrition streaming into her left.
Faina has been encouraged to try eating. It is a tough challenge when the zone from tongue to the last stop on the intestinal freeway feels like an ongoing napalm attack. She had some chicken soup, a few hours later a little bit of Kefir, and several hours later, some rice pudding. It is amazing when ingesting a forkful represents a leap of faith and an expression of bravery. She generally has to lie down for a half hour after even a quarter of a cup of food.
The scoop on some of the doctors visits -
Dr. Schulick - There is no surgical solution to the intestinal problems. HER-2/neu test results - Negative. This is a disappointment. It means she is not a candidate for a new drug, Herceptin, recently approved for recurrent gastric cancer.
Dr. Narayen - checked out the abdominal x-rays that were taken over the weekend. He said there is no blockage in the intestines and suspects that the cancer in the peritoneum (the lining of the abdominal cavity) is interfering with the motility of the intestines, that is, the ability of the intestines to flex and move food through them. He wrote prescriptions, suggested an over the counter product, and advised raising the head of the bed so gravity could help move things along.
Dr. K. - Some serious weirdness here. At one point in the conversation he suggested Faina go off the chemotherapy altogether. The implications are obvious. That proposal was a non-starter. Then for Faina's intestinal discomfort he suggested a G-tube, essentially a pressure valve. We also scheduled Wednesday's chemo.
Prescription slip in hand, I went back upstairs to Dr. N's office to set up this procedure. I spent all of about 30 seconds in the waiting room when, at his request, his secretary ushered me into his office. He told me that he could not insert a G-tube since Faina does not have a G, as in Gastric - "of and related to the stomach." He begged off attempting to do the procedure to the intestines, being honest in saying it would be beyond his capabilities. (Dr. K called later, somewhat embarrassed, realizing the lack of G for a G-tube.)
We were undeterred by this obstacle. In the car, on the way home, we called Dr. Gertner and set up today's appointment. Dr. G is a story in and of himself and figures prominently in this 21 month journey, but I will let that narrative sit for now. Suffice to say, we have well placed, enormous confidence in him. He looked at the CT scan and the abdominal x-ray, did his own sonogram and said he was confident he could laparoscopically run a tube for decompression. He ordered a "Small Bowel Series." This story is to be continued.
It has been a rough night with Faina up every half-hour or so. She's taken Oxycontyn. She's taken Ambien. Time to check her and maybe catch a few Zzzzzz.
Thursday, January 20, 2011
Friday, January 14, 2011
Marching Orders
It has now been a second week of delay on resuming the chemo.
It has finally happened, they don't ask for my name at the pharmacist. I would rather be known at the local pub.
Yet another specialist has entered the narrative. Yesterday we met with Dr. Narayen at Digestive Disease Associates P.A. One of his colleagues was suggested to us, but given the time sensitive need to get in to a gastroenterologist and her unavailability until February, we took the appointment we could get. Dr. N turned out to be impressive in skill and ability to explain what he thinks is going on. He was confident that the intestines were not completely blocked and that there is an as yet unidentified a mass on the lower right side of the abdomen. Immediate marching orders: 1) Liquid diet only!; 2) Stop taking some of the over-the-counter laxatives, they can cause more pressure on the system and bring about the rupture that would be disasterous; 3) Ease back on the pain meds, they aggrivate the blockage; 4) Get an abdominal X-Ray in the next few days; and 5) Come back next Tuesday. Surgery is prettty much not an option. The goal is to get the chemo started again. It's a plan.
My parents stopped by yesterday. Mom brought the ingredients for chicken soup and got busy in the kitchen.
Margo did all of the set-up of the TPN last night. I had taught her how two nights earlier and this time, all I had to do was sit back and watch. Faina appreciated the new skill set.
Some of the next big things coming up: The first Shabbat dinner with and for our guest Emmalene. Getting through the weekend. Tuesday appointments - Dr. Schulick (Hopkins), Dr. N., and Dr. K. Going from there.
It has finally happened, they don't ask for my name at the pharmacist. I would rather be known at the local pub.
Yet another specialist has entered the narrative. Yesterday we met with Dr. Narayen at Digestive Disease Associates P.A. One of his colleagues was suggested to us, but given the time sensitive need to get in to a gastroenterologist and her unavailability until February, we took the appointment we could get. Dr. N turned out to be impressive in skill and ability to explain what he thinks is going on. He was confident that the intestines were not completely blocked and that there is an as yet unidentified a mass on the lower right side of the abdomen. Immediate marching orders: 1) Liquid diet only!; 2) Stop taking some of the over-the-counter laxatives, they can cause more pressure on the system and bring about the rupture that would be disasterous; 3) Ease back on the pain meds, they aggrivate the blockage; 4) Get an abdominal X-Ray in the next few days; and 5) Come back next Tuesday. Surgery is prettty much not an option. The goal is to get the chemo started again. It's a plan.
My parents stopped by yesterday. Mom brought the ingredients for chicken soup and got busy in the kitchen.
Margo did all of the set-up of the TPN last night. I had taught her how two nights earlier and this time, all I had to do was sit back and watch. Faina appreciated the new skill set.
Some of the next big things coming up: The first Shabbat dinner with and for our guest Emmalene. Getting through the weekend. Tuesday appointments - Dr. Schulick (Hopkins), Dr. N., and Dr. K. Going from there.
Tuesday, January 11, 2011
Playing Chicken
Faina enjoyed a basket I brought home from last night's Religious School Committee meeting. Everyone had pitched in and obviously people have been reading this blog. The choice of a DVD of "I Love Lucy" was beyond brilliant. I have long appreciated how my darling wife is a combination of the naturalized citizen-uniquely talented-bandleader Ricky and the vivacious-adventurous-live-for-the-moment Lucy.
It was a good cap on an interesting day. First thing in the morning, after a miserable weekend, Faina called Dr. K's office. Their answer was, where have you been, you have a 9:00 appointment. Actually, the appointment had been cancelled last week, just someone had failed to delete it from the schedule. That aside, there was an opening at 9:30, so the question became can you get here by then, so it was hustle out the door. The appointment was a touch on the surreal side. Dr. K said that the problem was likely a kink in the intestines, something not unusual for someone who had undergone several surgeries in the abdominal cavity. He said to stick to a clear liquid diet for the next few days and the next cycle of chemo would be postponed to the following week. Then somewhat spontaneously, with some concern for dehydration, Dr. K recommended Faina get a two liter infusion of saline solution, with an antacid chaser. At the rate of a drip, that meant an unplanned three hours of drip, drip, drip. This led to thoughts on my part of: the Chinese Water Torture (apologies if there is a more PC phrasing of that cliche), the books I habitually keep in my car-but we had taken Faina's, the fully charged laptop sitting by my desk, the NYT languishing in our driveway, and appreciation for my Crackberry. At about 1:00 we get home and Marianne, the home health care nurse, is waiting, having arrived a little early, and wondering to where we had disappeared.
Next up was a series of phone calls.
First an idea inspired by a seeming inability on the part of Hopkins to test tissue samples for HER2 positive status: We called Dr. H, the gastroenterologist who performed the endoscopy, at Faina's urging, that discovered the gastric cancer 20 months ago. His administrator said that he was away on vacation and would get back to us, meanwhile they will check to see if they still have a tissue sample.
Then Faina connected with her worldwide network of physician friends. Dr. I, in the Netherlands, was aghast at the lack of aggressive treatment for the inflamed colon or the blocked intestines. She cautioned that a rupture and peritonitis would complicate everything else with which we are dealing.
The next physician conversation was with Dr. K who said that he recommended we speak with a gastroenterologist. Neither of us heard him offer that advice at that morning's appointment. Whatever! Well, our original gastroman is away, so we called Dr. K's recommendation, Dr. M who as luck would have it is also on vacation; perhaps she is with Dr. H. So, knowing that time really is of the essence, we took the first appointment we could get, with an associate, on Thursday.
When I got home from the RSC meeting, it was time to feed Faina, or more accurately, to set up her intravenous nutrition. After adding the vitamins, setting up the pump ... I go to flush her PICC line and it is completely blocked. I even switch out the "positive pressure valve" and still no success. I finally go to the alternative line and that works. Yay! It wasn't panic time, but with no other source of nutrition, getting the TPN started was not unimportant.
And there was evening and there was morning, another day.
It was a good cap on an interesting day. First thing in the morning, after a miserable weekend, Faina called Dr. K's office. Their answer was, where have you been, you have a 9:00 appointment. Actually, the appointment had been cancelled last week, just someone had failed to delete it from the schedule. That aside, there was an opening at 9:30, so the question became can you get here by then, so it was hustle out the door. The appointment was a touch on the surreal side. Dr. K said that the problem was likely a kink in the intestines, something not unusual for someone who had undergone several surgeries in the abdominal cavity. He said to stick to a clear liquid diet for the next few days and the next cycle of chemo would be postponed to the following week. Then somewhat spontaneously, with some concern for dehydration, Dr. K recommended Faina get a two liter infusion of saline solution, with an antacid chaser. At the rate of a drip, that meant an unplanned three hours of drip, drip, drip. This led to thoughts on my part of: the Chinese Water Torture (apologies if there is a more PC phrasing of that cliche), the books I habitually keep in my car-but we had taken Faina's, the fully charged laptop sitting by my desk, the NYT languishing in our driveway, and appreciation for my Crackberry. At about 1:00 we get home and Marianne, the home health care nurse, is waiting, having arrived a little early, and wondering to where we had disappeared.
Next up was a series of phone calls.
First an idea inspired by a seeming inability on the part of Hopkins to test tissue samples for HER2 positive status: We called Dr. H, the gastroenterologist who performed the endoscopy, at Faina's urging, that discovered the gastric cancer 20 months ago. His administrator said that he was away on vacation and would get back to us, meanwhile they will check to see if they still have a tissue sample.
Then Faina connected with her worldwide network of physician friends. Dr. I, in the Netherlands, was aghast at the lack of aggressive treatment for the inflamed colon or the blocked intestines. She cautioned that a rupture and peritonitis would complicate everything else with which we are dealing.
The next physician conversation was with Dr. K who said that he recommended we speak with a gastroenterologist. Neither of us heard him offer that advice at that morning's appointment. Whatever! Well, our original gastroman is away, so we called Dr. K's recommendation, Dr. M who as luck would have it is also on vacation; perhaps she is with Dr. H. So, knowing that time really is of the essence, we took the first appointment we could get, with an associate, on Thursday.
When I got home from the RSC meeting, it was time to feed Faina, or more accurately, to set up her intravenous nutrition. After adding the vitamins, setting up the pump ... I go to flush her PICC line and it is completely blocked. I even switch out the "positive pressure valve" and still no success. I finally go to the alternative line and that works. Yay! It wasn't panic time, but with no other source of nutrition, getting the TPN started was not unimportant.
And there was evening and there was morning, another day.
Monday, January 10, 2011
Ebb and Flow
Friday morning started off with a boost for the spirits. We stopped by Faina's office for some dental care. It is always a delight to see Faina in an environment that has long brought her great joy. She enjoys the atmosphere of that busy practice and the chance to connect with her colleagues. It was good to run into Dr. W. and to personally thank him for a particularly well timed bouquet. The mood changed in the car on the way home. Faina suffered from the thought of the life she has built for our family and herself and the randomness of the disease that has come to afflict her. We tried to take a walk at Lake Elkorn, but it was just too cold, even properly bundled up.
When Dr. K. proposed a one week hiatus from the chemotherapy, we had hoped Faina's body would use the time to heal, be more ready for a next cycle, and that it would be a week of energy and appetite. It did not work out that way. If anything the trajectory of the past week has been in the opposite direction. Friday night was particularly difficult with Faina being in pain and experiencing nausea all through the night. While the recent CT scan showed no sign of anything untoward, her belly is swollen like we have not seen in months. I'm hoping that this is just a terribly rocky period and that Faina will be feeling better in a few days. At that point, she will begin a new cycle of chemo.
Faina perked up for a visit from a few friends and later for the arrival of our latest houseguest, a student from Rwanda. Heraclitus said, "The only constant is change." Amen.
When Dr. K. proposed a one week hiatus from the chemotherapy, we had hoped Faina's body would use the time to heal, be more ready for a next cycle, and that it would be a week of energy and appetite. It did not work out that way. If anything the trajectory of the past week has been in the opposite direction. Friday night was particularly difficult with Faina being in pain and experiencing nausea all through the night. While the recent CT scan showed no sign of anything untoward, her belly is swollen like we have not seen in months. I'm hoping that this is just a terribly rocky period and that Faina will be feeling better in a few days. At that point, she will begin a new cycle of chemo.
Faina perked up for a visit from a few friends and later for the arrival of our latest houseguest, a student from Rwanda. Heraclitus said, "The only constant is change." Amen.
Wednesday, January 5, 2011
Ups and Downs
We just enjoyed an incredible, long weekend with some of our nearest and dearest friends. The conversation was constant, lively, and therapeutic for Faina. A lot of story swapping, a lot of eating, a contribution to the bottom line at Stolichnaya, and an instant shrinking of the distances of time and space. When the last of the guests was dropped off at BWI, instead of a sigh of relief we wondered how the time passed so quickly.
Monday was mostly awful, Tuesday a little less bad, and we shall see what Wednesday brings. Dr. K thought the ascites was back, an indication that the chemo was not being effective. Among his comments, "There are other chemotherapy regimens we can try," "Gastric cancer is a vicious, aggressive cancer," "You've dealt with this disease with an uncommon dignity" and then the suggestion that we meet with our rabbi. It didn't take the interpretive skills of an English lit major to read this as "Put your affairs in order." Soldiering on, our next stop was American Radiology for the tri-monthly CT scan. Somehow their staff must have collectively taken their 100 mg Unhappy pills that morning as everyone we encountered there seemed to be snippier than the previous person. We didn't get the report, but we got a CD of the test and rushed it up to Dr. Esquivel's office at St. Agnes Hospital to see if Faina would qualify for a surgical procedure. We then headed directly home for the appointment with Marianne, the home health care nurse from Hopkins. On the way, a car made a dangerous maneuver, cutting in front of us then realizing that there wasn't much space in his new lane slammed on his breaks. No accident, but it was one more reminder of the fragility of life and the conversation turned to finalizing our wills. We anticipated a call from Dr. K. reporting on the CT results and telling us if we should come in the next day. It was a draining last day before a new cycle of chemo.
Today was a slight scramble out the door with a side trip to Atholton HS to drop off a well rested Jamie. Give the child credit, in 10 minutes she can be up, brushed, dressed, made-up, fed, and out the door. We get to the oncology center and nurse Allie says she does not have her orders from Dr. K. and that he will be out in 15 minutes to speak with us. She gives us a hint of what he has to say, so it isn't a quarter of an hour mired in deep dread. Dr. K. then appears and says, the bloating is not from ascites, but from an inflamed colon. I never thought an inflamed colon would be considered good news, but here we are. His suggestion, let's not do the chemo this week, give the inflammation a chance to calm down and pick up where we left off next week. We also got a call from Dr. Esquivel's office, the cancer has not shrunk sufficiently to go forward with the surgery. Try again in three months. Dr. K. does not think surgery is the way to go anyway, so should the option appear we will be in the position of arbitrating between doctors opinions. Margo prepared all the makings for burritos, cranked up the MacBook with some mood music, and, when Jamie got back from her rehearsal, we all enjoyed a meal that would have put her in strong position in an Iron Chef competition.
Monday was mostly awful, Tuesday a little less bad, and we shall see what Wednesday brings. Dr. K thought the ascites was back, an indication that the chemo was not being effective. Among his comments, "There are other chemotherapy regimens we can try," "Gastric cancer is a vicious, aggressive cancer," "You've dealt with this disease with an uncommon dignity" and then the suggestion that we meet with our rabbi. It didn't take the interpretive skills of an English lit major to read this as "Put your affairs in order." Soldiering on, our next stop was American Radiology for the tri-monthly CT scan. Somehow their staff must have collectively taken their 100 mg Unhappy pills that morning as everyone we encountered there seemed to be snippier than the previous person. We didn't get the report, but we got a CD of the test and rushed it up to Dr. Esquivel's office at St. Agnes Hospital to see if Faina would qualify for a surgical procedure. We then headed directly home for the appointment with Marianne, the home health care nurse from Hopkins. On the way, a car made a dangerous maneuver, cutting in front of us then realizing that there wasn't much space in his new lane slammed on his breaks. No accident, but it was one more reminder of the fragility of life and the conversation turned to finalizing our wills. We anticipated a call from Dr. K. reporting on the CT results and telling us if we should come in the next day. It was a draining last day before a new cycle of chemo.
Today was a slight scramble out the door with a side trip to Atholton HS to drop off a well rested Jamie. Give the child credit, in 10 minutes she can be up, brushed, dressed, made-up, fed, and out the door. We get to the oncology center and nurse Allie says she does not have her orders from Dr. K. and that he will be out in 15 minutes to speak with us. She gives us a hint of what he has to say, so it isn't a quarter of an hour mired in deep dread. Dr. K. then appears and says, the bloating is not from ascites, but from an inflamed colon. I never thought an inflamed colon would be considered good news, but here we are. His suggestion, let's not do the chemo this week, give the inflammation a chance to calm down and pick up where we left off next week. We also got a call from Dr. Esquivel's office, the cancer has not shrunk sufficiently to go forward with the surgery. Try again in three months. Dr. K. does not think surgery is the way to go anyway, so should the option appear we will be in the position of arbitrating between doctors opinions. Margo prepared all the makings for burritos, cranked up the MacBook with some mood music, and, when Jamie got back from her rehearsal, we all enjoyed a meal that would have put her in strong position in an Iron Chef competition.
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