Many people are anxiously awaiting the results from E.'s recent tests. So are we.
On Friday, E. had another PET/CT scan.
Today, E. had a bioposy of that shoulder area lymph node.
And we wait.
E. has no other appointments or procedures scheduled at this point. And yet we can't go home either. Everything from here on out is contingent upon the biopsy results.
If the results are negative (meaning the cancer has not spread to that clavicular lymph nodes), then we'll meet with the surgeon again to discuss the possibility of surgery.
If the results are positive (meaning the cancer has spread to other parts of the body), then we'll meet with the medical oncologist again to discuss further treatment such as chemotherapy and possibly radiation.
Nothing can be scheduled until we have those results. And those results could be in as early as Wednesday morning or as late as Friday afternoon. The other kink is that the medical oncologist only sees patients on Mondays and Thursdays. (Different clinics within the hospital are open different days.) And we're not sure if the surgeon sees patients any day but Wednesday.
See all the various "what if" scenarios? Not much we can do, but hang tight and wait.
S.
Monday, June 29, 2009
Wednesday, June 24, 2009
Yucky lymph nodes
Today was the day we were supposed to meet with the surgeon. The day we were supposed to talk about the surgery. Schedule the surgery. Plan for the surgery. And today was the day we were supposed to go home.
The day started early when we checked in at 7:00 a.m. for Take #2 of the Endoscopic Ultrasound/Endoscopy/Fine Needle Aspiration or whatever else you want to call it. E.'s day of starvation paid off and since there was no food in his tummy, they were able to continue with the procedure. Once we had the preliminary report in hand, we headed to the Thoracic Center to meet with the surgeon. Since our appointment was originally scheduled at 8:00 a.m. and we obviously didn't make that, they were just going to "squeeze" us in. The front desk did inform us that the surgeon wanted to go home early today, so that was good news for us in terms of probable wait time. So, we sat and waited. And sat and waited. And sat and waited some more. I joked that maybe the surgeon usually went home at 9:00 p.m., and by going home early, he meant he was going home at 7:00 p.m. instead. I think the joke was on me. At 3:45 p.m., they finally called us in to a room. At 4:45 p.m., the nurse practioner came in. And finally, well after 5:30 p.m., we met with the surgeon.
Although we were frustrated with the long wait, I do have to give the nurse practioner and the surgeon kudos for being well informed about E.'s case. There weren't the routine questions about his health history, symptoms, etc. that we seem to answer at every, single appointment. They had obviously read his file. They knew his case. They reviewed a couple of key points and that was it. E.'s case had been already presented to the board and it was agreed that he would most likely be a surgical candidate.
But . . . the lymph nodes are concerning. There are some lymph nodes in the lower esophagus/upper stomach region, as well as some lymph nodes in the chest area. There is also that celiac lymph node that tested positive that we already knew about. All that is workable. All that does not eliminate the possibility of surgery. But . . . another but . . . there is a upper clavicle lymph node (by the right shoulder) that could change everything. If that lymph node is positive, then surgery is no longer a consideration. A positive lymph node in that area would mean that the cancer has metastisized to other areas of the body and surgery wouldn't be beneficial.
E. now has a series of new appointments. He'll undergo more tests, including an ultrasound with a fine needle aspiration of that clavicle lymph node (using an ultrasound picture, they'll insert a long needle into the collar bone area of his right shoulder and draw out some tissue to biopsy). I'm praying with all my might that it comes back negative and we can meet with the surgeon to discuss surgery after all. If it is positive, we'll meet with the oncologist again to determine another course of treatment of chemotherapy and possibly radiation.
So, we changed our flight reservations, extended our rental car and checked back into a hotel. We'll be here at least another week. And then we'll go from there.
We're trying really really hard to stay positive. But I'd be lying if I said this didn't scare the crap out of me. Prayers and positive vibes would sure be appreciated about now.
S.
The day started early when we checked in at 7:00 a.m. for Take #2 of the Endoscopic Ultrasound/Endoscopy/Fine Needle Aspiration or whatever else you want to call it. E.'s day of starvation paid off and since there was no food in his tummy, they were able to continue with the procedure. Once we had the preliminary report in hand, we headed to the Thoracic Center to meet with the surgeon. Since our appointment was originally scheduled at 8:00 a.m. and we obviously didn't make that, they were just going to "squeeze" us in. The front desk did inform us that the surgeon wanted to go home early today, so that was good news for us in terms of probable wait time. So, we sat and waited. And sat and waited. And sat and waited some more. I joked that maybe the surgeon usually went home at 9:00 p.m., and by going home early, he meant he was going home at 7:00 p.m. instead. I think the joke was on me. At 3:45 p.m., they finally called us in to a room. At 4:45 p.m., the nurse practioner came in. And finally, well after 5:30 p.m., we met with the surgeon.
Although we were frustrated with the long wait, I do have to give the nurse practioner and the surgeon kudos for being well informed about E.'s case. There weren't the routine questions about his health history, symptoms, etc. that we seem to answer at every, single appointment. They had obviously read his file. They knew his case. They reviewed a couple of key points and that was it. E.'s case had been already presented to the board and it was agreed that he would most likely be a surgical candidate.
But . . . the lymph nodes are concerning. There are some lymph nodes in the lower esophagus/upper stomach region, as well as some lymph nodes in the chest area. There is also that celiac lymph node that tested positive that we already knew about. All that is workable. All that does not eliminate the possibility of surgery. But . . . another but . . . there is a upper clavicle lymph node (by the right shoulder) that could change everything. If that lymph node is positive, then surgery is no longer a consideration. A positive lymph node in that area would mean that the cancer has metastisized to other areas of the body and surgery wouldn't be beneficial.
E. now has a series of new appointments. He'll undergo more tests, including an ultrasound with a fine needle aspiration of that clavicle lymph node (using an ultrasound picture, they'll insert a long needle into the collar bone area of his right shoulder and draw out some tissue to biopsy). I'm praying with all my might that it comes back negative and we can meet with the surgeon to discuss surgery after all. If it is positive, we'll meet with the oncologist again to determine another course of treatment of chemotherapy and possibly radiation.
So, we changed our flight reservations, extended our rental car and checked back into a hotel. We'll be here at least another week. And then we'll go from there.
We're trying really really hard to stay positive. But I'd be lying if I said this didn't scare the crap out of me. Prayers and positive vibes would sure be appreciated about now.
S.
Monday, June 22, 2009
A Bust
Today was a bust.
E. went through his "pre-op" day on Friday without any complications . . . EKG, blood work, etc. He also received instructions for his endoscopic ultrasound . . . the standard 'no food after midnight and nothing by mouth four hours before surgery.'
We checked in at 9:00 and were called back not long after. Just like his previous EUS's, the nurse checked his vitals, the anethesiologist and the doctor spoke to us, and then they hooked up his IV and wheeled him off to the operating room for his procedure at 11:00.
I asked for an update at 11:45 and was allowed to go sit with him in recovery. As he opened his eyes, he mumbled, "They couldn't do it." Huh? Obviously he was still on drugs. Turns out, he was right. They didn't do the endoscopic ultrasound.
They discovered that there was still food in E.'s stomach. Even though he hadn't eaten since dinner the previous night, the doctor explained that often after radiation, the digestive system slows WAY down. And because there is a risk for aspiration during sedation, the procedure was terminated.
Obviously this throws a kink in the plans. The surgeon needs the information that was supposed to be obtained from today's procedure when we consult with him on Wednesday morning. We pleaded our case to the scheduling queen and they were able to fit E. in for another procedure Wednesday morning at 8:00. This time, he gets a clear liquid diet for 24 hours prior to the surgery to make sure there are no potential complications with anethesia. (Liquids can be suctioned out at the time of surgery, unlike solids.) E. is not a happy camper.
Since the consultation with the surgeon was also scheduled for Wednesday morning at 8:00, we went and spoke with them in hopes of just making the appointment a little later. Things don't exactly work that way. So, whether or not we get to see the surgeon on Wednesday depends on how long the procedure takes and how late we are. Cross your fingers.
There are some things that are just out of our control.
S.
E. went through his "pre-op" day on Friday without any complications . . . EKG, blood work, etc. He also received instructions for his endoscopic ultrasound . . . the standard 'no food after midnight and nothing by mouth four hours before surgery.'
We checked in at 9:00 and were called back not long after. Just like his previous EUS's, the nurse checked his vitals, the anethesiologist and the doctor spoke to us, and then they hooked up his IV and wheeled him off to the operating room for his procedure at 11:00.
I asked for an update at 11:45 and was allowed to go sit with him in recovery. As he opened his eyes, he mumbled, "They couldn't do it." Huh? Obviously he was still on drugs. Turns out, he was right. They didn't do the endoscopic ultrasound.
They discovered that there was still food in E.'s stomach. Even though he hadn't eaten since dinner the previous night, the doctor explained that often after radiation, the digestive system slows WAY down. And because there is a risk for aspiration during sedation, the procedure was terminated.
Obviously this throws a kink in the plans. The surgeon needs the information that was supposed to be obtained from today's procedure when we consult with him on Wednesday morning. We pleaded our case to the scheduling queen and they were able to fit E. in for another procedure Wednesday morning at 8:00. This time, he gets a clear liquid diet for 24 hours prior to the surgery to make sure there are no potential complications with anethesia. (Liquids can be suctioned out at the time of surgery, unlike solids.) E. is not a happy camper.
Since the consultation with the surgeon was also scheduled for Wednesday morning at 8:00, we went and spoke with them in hopes of just making the appointment a little later. Things don't exactly work that way. So, whether or not we get to see the surgeon on Wednesday depends on how long the procedure takes and how late we are. Cross your fingers.
There are some things that are just out of our control.
S.
Monday, June 15, 2009
Questions answered
We talked to several folks at MD Anderson today and at least got some of our questions answered.
E. does in fact have to have another endoscopic ultrasound performed. Since he has his pre-procedure appointments on Friday for the EUS on Monday, we're headed back to Texas on Thursday.
Once we meet with the surgeon on Wednesday, June 22nd, surgery "could be" as soon as the following week. Or not. Guess we'll see.
Recovery time could be awhile. Minimum of a week in the hospital. More than likely, two weeks. Another 5 to 7 days of hanging out before he's allowed to travel. Think we'll pick up a southern accent?
E3 is not allowed to be in E.'s hospital room. At all. Since the patients all have compromised immune systems, they don't want to chance having children bring in yucky germs. Understandable. But soooo difficult. I'm having a tough time at the thought of being apart from him . . . it's not like the older kids that we can talk to on the phone, text, e-mail, etc. Uggghhh. But this isn't about me.
Fit for a king.
E3 in middle of the king-sized bed at the hotel.
(Taken with a phone, so forgive the crappy quality.)
Now, can you imagine leaving that face behind? :(
S.
Sunday, June 14, 2009
We're home
We never did get the phone call we expected letting us know about the surgeon.
What happened though was this . . .
All around the hospital, they have computer monitors that give you directions where you need to go. You can also punch in your medical identification number along with a PIN and access your account, which brings up a list of your appointments. On a whim, we accessed E.'s account and discovered that his Monday appointment with the medical oncologist was no longer on his schedule (presumably because the oncologist was referring him on to the surgeon). We also discovered that an appointment is scheduled with a surgeon, but not until Wednesday, June 24th. Furthermore, the appointments on Friday, June 19th and Monday, June 22nd are still on the calendar as well.
We were hoping to talk to the surgeon earlier, at least prior to the appointments on the 19th and 22nd to see if the recent procedures E. had performed in Reno would suffice and we could forego those appointments. But, it is what it is.
Based on the new schedule, we determined it was cheaper to fly home than to hang out in Houston waiting for appointments. Additionally, we have munchkins on the homefront to think about too.
Anyways, we are home.
Tomorrow we will call the hospital and hope to get some questions answered . . . Is there any way we can use the information we brought with us from Reno instead of having duplicate procedures performed? (The oncologist did inform us that the surgeon may want to have the procedures duplicated to have up-to-the-minute information on his hands to better plan E.'s surgery.) Once we meet with the surgeon, is there a tentative timeline for surgery? (Are we talking 5 days, 5 weeks, or what?) And what about recovery? How long is E. expected to stay in the hospital post-surgery? How long is E. expected to stay in the area before he can travel home? And then there is the issue of E3 . . . what areas of the hospital will E. be in? and can I be there with E3? Is it going to be workable to leave E3 in the "day care" for little bits of time or would he be better off at home? (As much as I don't want to leave E3, I also want to be available for E.) And of course, there are all the other children we need to think about too, as well as travel and lodging arrangements for ourselves.
So much to plan for. So hard to plan though when so much is unknown.
As E. says, we just gotta roll with it baby.
What happened though was this . . .
All around the hospital, they have computer monitors that give you directions where you need to go. You can also punch in your medical identification number along with a PIN and access your account, which brings up a list of your appointments. On a whim, we accessed E.'s account and discovered that his Monday appointment with the medical oncologist was no longer on his schedule (presumably because the oncologist was referring him on to the surgeon). We also discovered that an appointment is scheduled with a surgeon, but not until Wednesday, June 24th. Furthermore, the appointments on Friday, June 19th and Monday, June 22nd are still on the calendar as well.
We were hoping to talk to the surgeon earlier, at least prior to the appointments on the 19th and 22nd to see if the recent procedures E. had performed in Reno would suffice and we could forego those appointments. But, it is what it is.
Based on the new schedule, we determined it was cheaper to fly home than to hang out in Houston waiting for appointments. Additionally, we have munchkins on the homefront to think about too.
Anyways, we are home.
Tomorrow we will call the hospital and hope to get some questions answered . . . Is there any way we can use the information we brought with us from Reno instead of having duplicate procedures performed? (The oncologist did inform us that the surgeon may want to have the procedures duplicated to have up-to-the-minute information on his hands to better plan E.'s surgery.) Once we meet with the surgeon, is there a tentative timeline for surgery? (Are we talking 5 days, 5 weeks, or what?) And what about recovery? How long is E. expected to stay in the hospital post-surgery? How long is E. expected to stay in the area before he can travel home? And then there is the issue of E3 . . . what areas of the hospital will E. be in? and can I be there with E3? Is it going to be workable to leave E3 in the "day care" for little bits of time or would he be better off at home? (As much as I don't want to leave E3, I also want to be available for E.) And of course, there are all the other children we need to think about too, as well as travel and lodging arrangements for ourselves.
So much to plan for. So hard to plan though when so much is unknown.
As E. says, we just gotta roll with it baby.
Thursday, June 11, 2009
Howdy from Texas
Today was our first day at MD Anderson. First of all, let me just tell you that this place is crazy huge. MD Anderson is comprised of three buildings, but is part of the bigger "Texas Medical Center," along with 40 other institutions! Everywhere you look there are hospitals . . . the Methodist Hospital, Shriner's Hospital, Memorial Hospital, Children's Hospital . . . on and on it goes. It's a city of hospitals within the city of Houston. As if MD Anderson wasn't big enough itself!
Needless to say, we barely made it to our first appointment by 8:00 despite thinking we had given ourselves plenty of time. (Parking, by the way, is nuts. Valet at the hotel was $21.75, valet at the hospital is $15.00 and all the area parking garages are between $9.00 and $12.00.)
We hurried to our first appointment only to have to wait. And that began the theme for the entire day . . . "hurry up and wait." New patient registration . . . followed by a long wait . . . vital signs . . . followed by a long wait . . . meet with the nurse . . . followed by a long wait . . . meet with the physician's assistant . . . followed by a long wait. Are you catching a theme here?
Eventually we did in fact see the doctor. He had reviewed most of E.'s medical history prior to our arrival, but we had to bring additional films and reports with us as well. Pretty much the first words out of his mouth were "you should have surgery." He stated that radiation wasn't the answer as E. has already had almost the maximum amount of radiation. He also said that with most cancers, a group of cancer cells will survive the radiation, which is exactly E.'s case. More radiation could cause organ and tissue damage and besides, there is a high probability that this group of cancer cells would still survive. He did not feel that additional chemotherapy was the answer either as it would not be currative.
The doctor explained that it was a life-altering surgery, but a life-saving surgery. There is no question for E. . . . he will alter his life to save his life. When we asked about the cancerous lymph nodes, the doctor affirmed what we were hoping - lymph nodes can be surgically removed as well. Of course, we have not yet met with the surgeon and he will need to confirm that surgery in this case is appropriate and worthwhile. The doctor explained that his staff would be referring us to a surgeon and would be calling us with a consultation appointment.
We then rushed to another part of the hospital for lab work . . . followed by a long wait . . . chest x-rays . . . followed by a long wait . . . a quick bite to eat in the hospital cafeteria . . . followed by a long wait . . . prepping for at CT scan (remember that yummy barium he had to drink?) . . . followed by a long wait . . . the actual CT scan (nothing like a little barium up the butt to cap off the day). It was after 5:00 when we finally left the hospital and still no phone call about the surgeon. So we wait.
E. is tentatively scheduled for some more procedures on the 19th and another endoscopic ultrasound on the 22nd. The doctor wasn't sure if the surgeon would still want those procedures performed since E. recently had them done in Reno, but we won't know until we meet with the surgeon. Our follow-up appointment on Monday also hinges upon what happens with the surgeon. Hopefully we'll know more soon.
As a side note, there are many portions of the hospital where children under 13 are not allowed. Funny, a dear cyber-friend of mine told me that exact same thing but when I called the hospital and asked about it, they assured me that the were willing to work with families and especially those with new babies. Thankfully, MD Anderson does have a complimentary day care (I'm not even sure I can call it that as it is essentially a large closet) in two of the hospital's buildings. There's only two criteria . . . 1. the child must be related to a patient and 2. the child can only be left for two hours at a time (two hours in and then two hours out . . . then can come back for another two hours . . . and so it goes). Today E3 had the pleasure of being loved on by two wonderful women for less than two hours, but I'm not sure how that will work out in the days (and/or weeks and/or months) ahead, especially if E. has to have surgery. We'll have to figure something out.
It is hot here. And humid. In the 90's with 70% humidity. The kind of weather that as soon as you step out of the building, you feel sticky. I constantly feel like I need a shower. People have a sheen about them and women's hair is either flat and stuck to their heads (like mine) or frizzing out in all directions. I think I prefer the dry heat of the high desert myself. Inside the hospital though, it is downright chilly. We had been warned and brought jackets, which we both wore in the building, but it really does seem excessively cold. We literally saw folks with turtlenecks and vests on in the building, only to strip to tank tops as soon as they walked out the door. Oh well, I'd much rather have it cold than hot. E., not so much.
As always, E.'s been a trooper. We've managed to find humor many times throughout the day and have really made the best of the moments, even while sitting in waiting rooms and lobbies. It's been a long day and I'm off to snuggle my men before we see what tomorrow brings. I just know it is going to be good.
S.
Needless to say, we barely made it to our first appointment by 8:00 despite thinking we had given ourselves plenty of time. (Parking, by the way, is nuts. Valet at the hotel was $21.75, valet at the hospital is $15.00 and all the area parking garages are between $9.00 and $12.00.)
We hurried to our first appointment only to have to wait. And that began the theme for the entire day . . . "hurry up and wait." New patient registration . . . followed by a long wait . . . vital signs . . . followed by a long wait . . . meet with the nurse . . . followed by a long wait . . . meet with the physician's assistant . . . followed by a long wait. Are you catching a theme here?
Eventually we did in fact see the doctor. He had reviewed most of E.'s medical history prior to our arrival, but we had to bring additional films and reports with us as well. Pretty much the first words out of his mouth were "you should have surgery." He stated that radiation wasn't the answer as E. has already had almost the maximum amount of radiation. He also said that with most cancers, a group of cancer cells will survive the radiation, which is exactly E.'s case. More radiation could cause organ and tissue damage and besides, there is a high probability that this group of cancer cells would still survive. He did not feel that additional chemotherapy was the answer either as it would not be currative.
The doctor explained that it was a life-altering surgery, but a life-saving surgery. There is no question for E. . . . he will alter his life to save his life. When we asked about the cancerous lymph nodes, the doctor affirmed what we were hoping - lymph nodes can be surgically removed as well. Of course, we have not yet met with the surgeon and he will need to confirm that surgery in this case is appropriate and worthwhile. The doctor explained that his staff would be referring us to a surgeon and would be calling us with a consultation appointment.
We then rushed to another part of the hospital for lab work . . . followed by a long wait . . . chest x-rays . . . followed by a long wait . . . a quick bite to eat in the hospital cafeteria . . . followed by a long wait . . . prepping for at CT scan (remember that yummy barium he had to drink?) . . . followed by a long wait . . . the actual CT scan (nothing like a little barium up the butt to cap off the day). It was after 5:00 when we finally left the hospital and still no phone call about the surgeon. So we wait.
E. is tentatively scheduled for some more procedures on the 19th and another endoscopic ultrasound on the 22nd. The doctor wasn't sure if the surgeon would still want those procedures performed since E. recently had them done in Reno, but we won't know until we meet with the surgeon. Our follow-up appointment on Monday also hinges upon what happens with the surgeon. Hopefully we'll know more soon.
As a side note, there are many portions of the hospital where children under 13 are not allowed. Funny, a dear cyber-friend of mine told me that exact same thing but when I called the hospital and asked about it, they assured me that the were willing to work with families and especially those with new babies. Thankfully, MD Anderson does have a complimentary day care (I'm not even sure I can call it that as it is essentially a large closet) in two of the hospital's buildings. There's only two criteria . . . 1. the child must be related to a patient and 2. the child can only be left for two hours at a time (two hours in and then two hours out . . . then can come back for another two hours . . . and so it goes). Today E3 had the pleasure of being loved on by two wonderful women for less than two hours, but I'm not sure how that will work out in the days (and/or weeks and/or months) ahead, especially if E. has to have surgery. We'll have to figure something out.
It is hot here. And humid. In the 90's with 70% humidity. The kind of weather that as soon as you step out of the building, you feel sticky. I constantly feel like I need a shower. People have a sheen about them and women's hair is either flat and stuck to their heads (like mine) or frizzing out in all directions. I think I prefer the dry heat of the high desert myself. Inside the hospital though, it is downright chilly. We had been warned and brought jackets, which we both wore in the building, but it really does seem excessively cold. We literally saw folks with turtlenecks and vests on in the building, only to strip to tank tops as soon as they walked out the door. Oh well, I'd much rather have it cold than hot. E., not so much.
As always, E.'s been a trooper. We've managed to find humor many times throughout the day and have really made the best of the moments, even while sitting in waiting rooms and lobbies. It's been a long day and I'm off to snuggle my men before we see what tomorrow brings. I just know it is going to be good.
S.
Sunday, June 7, 2009
Helpers?
We are busy trying to finalize the last minute arrangements as we leave for Texas on Wednesday morning.
I think I've got the important stuff covered . . . someone (actually, several someones) to watch the boys.
But there are still a couple of little things I'm working on. If anyone is available to run kids to or from extra-curricular activities, would you please volunteer on the Care Calendar? Also, if anyone can bring a meal while we are gone, would you please check out the Care Calendar as well? I'm sure the babysitters, not to mention the boys (and us!), would greatly appreciate it.
We don't have a laptop, but heard there is a business center at MD Anderson with internet access for patients, so I am hoping to post an update from Texas.
Many, many thanks.
S.
I think I've got the important stuff covered . . . someone (actually, several someones) to watch the boys.
But there are still a couple of little things I'm working on. If anyone is available to run kids to or from extra-curricular activities, would you please volunteer on the Care Calendar? Also, if anyone can bring a meal while we are gone, would you please check out the Care Calendar as well? I'm sure the babysitters, not to mention the boys (and us!), would greatly appreciate it.
We don't have a laptop, but heard there is a business center at MD Anderson with internet access for patients, so I am hoping to post an update from Texas.
Many, many thanks.
S.
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