Megan is home. She came home from the hospital yesterday, as planned. The drive was uneventful, but as predicted by her doctors, it made her quite tired. She's had some visitors since then that brought her spirits up. I'm sure many more of you would like to visit. With Hurricane Irene on the way, Monday is probably the next day she'll be up for some visitors. Feel free to send me an email (makisupapiggy@hotmail.com) or call one of our cell phones and we'll try to work out a good time. If I don't answer, just leave a message and I'll get back to you when I can.
Saturday, August 27, 2011
Thursday, August 25, 2011
Another update from the hospital
I'm sorry if this is the first time you're hearing this latest update. There is nobody that wishes we were not here more than me, but unfortunately these are the facts of the situation.
Today we began the process to bring Megan home. The bilirubin levels continue to rise, and there is no treatment that her body can handle in this condition. While there is always reason to hope that these levels come down and a treatment can be resumed, her oncologist thinks this is unlikely. Megan's liver is largely taken over by tumor mass and it will likely continue to degrade and fail. Although there are no signs of infection in recent blood cultures, urinalysis and chest X-Ray, she will continue oral antibiotics at home for precautionary reasons. If there was an infection that precipitated this, it appears to have cleared up, but it's also possible that this has always been the cancer.
Megan is relieved to be going home. Home hospice has been contacted and will be available to help keep her comfortable and treat her symptoms. She will be able to sleep more (no multiple-per-night wake-ups to check vital signs) and "visiting hours" will be much more flexible. And of course, she will be in the comfort and familiarity of her own home surrounded by those who love her, including her two favorite cats.
Right now she is scheduled to be discharged on Friday around 11. We expect to speak to the hospice nurse that afternoon and arrange a time to meet her. We'll discuss a schedule for her to visit, learn more about the inter-disciplinary team that will help us care for her (in addition to the nurse, there are a social worker, a chaplain and other people available) and, in general, better understand the care that hospice provides to make the remaining time that Megan has as comfortable and liveable as possible.
Megan also wrote a few words before asking me to summarize the above details:
Well, we finally got some factual information from the one person we trust - my oncologist. She leveled with us and told us that it's looking pretty bleak and that we're kind of out of treatment options. So, I'm going into home hospice where I can feel more comfortable and spend more time with the kitties and not drive Rusty crazy going back and forth. I envision visiting hours to be more flexible, but I know I'm starting to lose it a bit as well. I'll try to post again when I know more, but we all know how that's been going.
I will continue to post updates as I can. Thank you for your continued prayers, thoughts and well-wishes.
Today we began the process to bring Megan home. The bilirubin levels continue to rise, and there is no treatment that her body can handle in this condition. While there is always reason to hope that these levels come down and a treatment can be resumed, her oncologist thinks this is unlikely. Megan's liver is largely taken over by tumor mass and it will likely continue to degrade and fail. Although there are no signs of infection in recent blood cultures, urinalysis and chest X-Ray, she will continue oral antibiotics at home for precautionary reasons. If there was an infection that precipitated this, it appears to have cleared up, but it's also possible that this has always been the cancer.
Megan is relieved to be going home. Home hospice has been contacted and will be available to help keep her comfortable and treat her symptoms. She will be able to sleep more (no multiple-per-night wake-ups to check vital signs) and "visiting hours" will be much more flexible. And of course, she will be in the comfort and familiarity of her own home surrounded by those who love her, including her two favorite cats.
Right now she is scheduled to be discharged on Friday around 11. We expect to speak to the hospice nurse that afternoon and arrange a time to meet her. We'll discuss a schedule for her to visit, learn more about the inter-disciplinary team that will help us care for her (in addition to the nurse, there are a social worker, a chaplain and other people available) and, in general, better understand the care that hospice provides to make the remaining time that Megan has as comfortable and liveable as possible.
Megan also wrote a few words before asking me to summarize the above details:
Well, we finally got some factual information from the one person we trust - my oncologist. She leveled with us and told us that it's looking pretty bleak and that we're kind of out of treatment options. So, I'm going into home hospice where I can feel more comfortable and spend more time with the kitties and not drive Rusty crazy going back and forth. I envision visiting hours to be more flexible, but I know I'm starting to lose it a bit as well. I'll try to post again when I know more, but we all know how that's been going.
I will continue to post updates as I can. Thank you for your continued prayers, thoughts and well-wishes.
Tuesday, August 23, 2011
Megan Update
On Thursday, August 18, Megan, Mom Lally and I went to Dana Farber for a scheduled appointment. It was Megan's last day of taking a new drug (Seliciclib) on the clinical trial that she is part of, and the intent was to check out her blood chemistry to see the effect of the chemicals, take a skin biopsy to view the effect of the drugs on cell division and perform other, similar trial-centric tests. As Megan has been a part of other trials, we've been through similar routines. This appointment was anything but routine.
The difficulties started earlier in the day after Megan got out of the shower. I observed that she was taking many short, rapid breaths. The appointment was just an hour from now, so we got in the car and made the ~45 mile drive to the Yawkey Center at Dana Farber. During this drive, Megan sat back and closed her eyes, and her breathing slowed to a more normal pace, and so we hoped all was well and she was just anxious for the appointment.
Once in the nurse's care, the "typical" tests were begun. The nurses had difficulty drawing blood, and surmised that Megan was dehydrated. No problem, they'll just run an IV and get her pumped up with fluids. Unfortunately, running an IV became a challenge. Megan's veins are good for playing hide-and-go-seek any day of the week, but even more so when she is a little dehydrated. Perhaps my perception of time is off a bit, but it seemed like 5 nurses took turns for almost 2 hours attempting to find a vein to get fluids running. As they attempted this, periodic blood pressure measurements showed a continual drop.
And the problematic symptoms only increased. During this time, new pains emerged in Megan's lower back and stomach area. She was light-headed, nauseous and eventually got sick. The nurses called an ambulance and let us know that Megan would be admitted to the emergency room because they would have more tools available to aid in getting an IV into her to get her re-hydrated.
Once in the emergency room, an IV was run and they began pumping lots of fluids into Megan. Several tests were run: Chest X-ray, 2 kinds of ultrasounds, and a VQ scan. The only definitive finding was that her gallbladder was enlarged, and the doctor's surmised that some kind of infection was responsible. This explained her other symptoms, as well.
Megan was admitted to the Brigham and Women's Hospital adjacent to Dana Farber in Boston and started on a trial of antibiotics. By Thursday night, her blood pressure was normal and Megan was feeling much better. On Friday, a new blood draw was taken and Megan's BP, pulse and temp were all looking good, and Megan was up and feeling well. Unfortunately, that blood draw showed that her white blood cell count (WBC) and some of the liver function tests (LFTs) were elevated.
It's now Tuesday, and this is largely where we still are today. Megan is still in the hospital. A variety of additional tests have been run, including chest X-Ray, MRI, and many blood draws. The WBCs have been increasing daily. Up until today most LFTs were increasing. Today showed that 4 of the 5 metrics in the LFTs all decreased, however the amount of Bilirubin ("Bili") present in Megan's blood continued to increase. That said, the WBC and Bili increase day-over-day was considerably smaller than the prior day.
The MRI has shown that Megan's liver bile duct, where bilirubin should be removed from the blood and converted to waste, is unobstructed. If this were obstructed, this would be a concrete (and bad) reason for the increased Bili counts in the blood. It's good news that this is not obstructed, but doesn't explain the source of the increased levels. The scan also showed that Megan's gallbladder is back to a normal size. Finally, the Gastro-intestinal Dr said he did not think there was an increase in tumor mass that could explain this, based on the MRI. We're still waiting for results of the chest X-ray to see what else we learn.
The current theory is that Megan does indeed have some kind of infection and that the antibiotics are working as evidenced by the normal sized gallbladder, normal BP, and decrease or slowing in a number of the metrics. The Dr's can justify that the Bili is high even though other metrics have lowered because the Liver likely slowed when infection was at its highest, and a queue of sorts of Bilirubin has built up in the blood and that the liver needs to get caught up. We will continue to watch these metrics over the next couple days. Additionally, a new blood culture has been taken to investigate for additional infectious agents.
That's the latest information. On a less "technical" note, Megan is feeling OK. Pain has decreased. She is often very tired and takes many naps, but when awake is in good spirits. She feels she is in the best care that she could be in, and is in no hurry to leave so long as there are additional questions to answer. When we have some more of the answers, I'll write back. Thanks for all your thoughts, prayers and well-wishes.
The difficulties started earlier in the day after Megan got out of the shower. I observed that she was taking many short, rapid breaths. The appointment was just an hour from now, so we got in the car and made the ~45 mile drive to the Yawkey Center at Dana Farber. During this drive, Megan sat back and closed her eyes, and her breathing slowed to a more normal pace, and so we hoped all was well and she was just anxious for the appointment.
Once in the nurse's care, the "typical" tests were begun. The nurses had difficulty drawing blood, and surmised that Megan was dehydrated. No problem, they'll just run an IV and get her pumped up with fluids. Unfortunately, running an IV became a challenge. Megan's veins are good for playing hide-and-go-seek any day of the week, but even more so when she is a little dehydrated. Perhaps my perception of time is off a bit, but it seemed like 5 nurses took turns for almost 2 hours attempting to find a vein to get fluids running. As they attempted this, periodic blood pressure measurements showed a continual drop.
And the problematic symptoms only increased. During this time, new pains emerged in Megan's lower back and stomach area. She was light-headed, nauseous and eventually got sick. The nurses called an ambulance and let us know that Megan would be admitted to the emergency room because they would have more tools available to aid in getting an IV into her to get her re-hydrated.
Once in the emergency room, an IV was run and they began pumping lots of fluids into Megan. Several tests were run: Chest X-ray, 2 kinds of ultrasounds, and a VQ scan. The only definitive finding was that her gallbladder was enlarged, and the doctor's surmised that some kind of infection was responsible. This explained her other symptoms, as well.
Megan was admitted to the Brigham and Women's Hospital adjacent to Dana Farber in Boston and started on a trial of antibiotics. By Thursday night, her blood pressure was normal and Megan was feeling much better. On Friday, a new blood draw was taken and Megan's BP, pulse and temp were all looking good, and Megan was up and feeling well. Unfortunately, that blood draw showed that her white blood cell count (WBC) and some of the liver function tests (LFTs) were elevated.
It's now Tuesday, and this is largely where we still are today. Megan is still in the hospital. A variety of additional tests have been run, including chest X-Ray, MRI, and many blood draws. The WBCs have been increasing daily. Up until today most LFTs were increasing. Today showed that 4 of the 5 metrics in the LFTs all decreased, however the amount of Bilirubin ("Bili") present in Megan's blood continued to increase. That said, the WBC and Bili increase day-over-day was considerably smaller than the prior day.
The MRI has shown that Megan's liver bile duct, where bilirubin should be removed from the blood and converted to waste, is unobstructed. If this were obstructed, this would be a concrete (and bad) reason for the increased Bili counts in the blood. It's good news that this is not obstructed, but doesn't explain the source of the increased levels. The scan also showed that Megan's gallbladder is back to a normal size. Finally, the Gastro-intestinal Dr said he did not think there was an increase in tumor mass that could explain this, based on the MRI. We're still waiting for results of the chest X-ray to see what else we learn.
The current theory is that Megan does indeed have some kind of infection and that the antibiotics are working as evidenced by the normal sized gallbladder, normal BP, and decrease or slowing in a number of the metrics. The Dr's can justify that the Bili is high even though other metrics have lowered because the Liver likely slowed when infection was at its highest, and a queue of sorts of Bilirubin has built up in the blood and that the liver needs to get caught up. We will continue to watch these metrics over the next couple days. Additionally, a new blood culture has been taken to investigate for additional infectious agents.
That's the latest information. On a less "technical" note, Megan is feeling OK. Pain has decreased. She is often very tired and takes many naps, but when awake is in good spirits. She feels she is in the best care that she could be in, and is in no hurry to leave so long as there are additional questions to answer. When we have some more of the answers, I'll write back. Thanks for all your thoughts, prayers and well-wishes.
Wednesday, August 10, 2011
New Trial
I thought now would be a good time to give an update on the new trial. I started on Monday. I went to Dana Farber and had a skin biopsy on my right thigh. I actually began taking the meds on Monday evening. So far I haven't really noticed too many side effects.
I have some mild dry skin. I have been pretty tired (nearly nodding off at work!). I have also been in a fair amount of pain over the last few days. It's all over the place. Sometimes in my right shoulder, sometimes in my center abdomen, sometimes on my right side. I'm hoping this is the tumor cells dying a horrible death.
On Monday evening I begin with the heavy hitter - the drug that is supposed to make me really tired and sick. But, I've heard that it goes away pretty quickly. We shall see. I'll keep you posted!
I have some mild dry skin. I have been pretty tired (nearly nodding off at work!). I have also been in a fair amount of pain over the last few days. It's all over the place. Sometimes in my right shoulder, sometimes in my center abdomen, sometimes on my right side. I'm hoping this is the tumor cells dying a horrible death.
On Monday evening I begin with the heavy hitter - the drug that is supposed to make me really tired and sick. But, I've heard that it goes away pretty quickly. We shall see. I'll keep you posted!
Thursday, August 4, 2011
Next
I had my pretesting appointment at Dana Farber on Wednesday, and I am happy to report that I am eligible to start the trial on Monday. The liver number that counts for this trial is still in the normal range. My other liver numbers have gotten a little worse (as expected), but the doctor felt comfortable letting me go the next 5 days without treatment so that I could start the next trial.
I am really pinning my hopes on this trial. We really need to find something that works because I am definitely feeling lots more pain and tiredness. It's hard to breathe deeply, because it causes a sharp pain in my right side when I try to take more than a shallow breath. This makes it difficult to do some activities, like walk up stairs. This is all very frustrating, but based on how I feel, I think I should know if we're starting to see results on the new meds.
Oddly enough, I have another comic to post. It's weird, this guy never posts about cancer and now he has two in one week. I thought this one was really funny, whereas the other one was more enlightening, and not really funny at all.
I thought this was cool. And yes, I do have these badass tattoos from my first rodeo. :-)
I am really pinning my hopes on this trial. We really need to find something that works because I am definitely feeling lots more pain and tiredness. It's hard to breathe deeply, because it causes a sharp pain in my right side when I try to take more than a shallow breath. This makes it difficult to do some activities, like walk up stairs. This is all very frustrating, but based on how I feel, I think I should know if we're starting to see results on the new meds.
Oddly enough, I have another comic to post. It's weird, this guy never posts about cancer and now he has two in one week. I thought this one was really funny, whereas the other one was more enlightening, and not really funny at all.
I thought this was cool. And yes, I do have these badass tattoos from my first rodeo. :-)
Subscribe to:
Posts (Atom)