I believe in miracles....miracles happen each and every day! I wake up, I enjoy feeding our pets, emptying the dishwasher and even washing dishes that didn't fit in it., doing the laundry...I enjoy seeing and talking with people, even emailing or messaging them on fb. This is my miracle that happens every day! Waking up and enjoying this day!
I also believe God has given me this journey. Although I did visualize as a long road with a few pot holes along the way....but now I feel it as a roller coaster! The ups and downs the sideways and even going around! And oh how I hate roller coasters!!!! It's even like playing poker....seems I never win!!!
on that note....Paul, Charlie and I went to see Dr. Kemeny at Sloan Kettering. We were to discuss the hepatic arterial pump and all that goes along with it. My appointment was for 2:30...but you all know how appointments go - more so for me - you play the waiting game.....Paul was lucky enough to have a casting call in Midtown at 4 pm....Charlie and I went into the office about 3:30 and waited some more. A nurse practitioner spoke with us and asked a million questions, then a young woman came in with the pump so we could see it and hold it....It is quite large! Then Dr. Kemeny came in....she began discussing this pump then said that when she read the scan results (not sure which one = CT or MRI) she noticed two (2) very tiny lesions which are brand new = in my lungs! One on each of them....okay, I'm human....I cried! Poor Paul was with us - because it was now about 5:30....She also highly suggested that along with this pump - chemo should be administered! I wasn't ready for that one...then she gave me the news on these new lesions....So...now I have to go to have this port put in....I had/have a choice of either as outpatient in Sloan or back to Newton by Dr. O'Brien who put it in originally....you all know me - I opt for Newton....so I have a date of either Monday, July 9 or Tuesday the 10th - they will get back to me. I need this before the 15th as I had all the pre-admission tests done in NY that are only good up to 30 days.... I have a call into Dr. May to find out if she spoke with Dr. Kemeny on what chemo's to use. Dr. K. suggested that I use the Panatubmab (the original one I had as a clinical study drug) and the 5 FU = the bag that I would carry for 2 days and another drug.... I'm so excited: NOT...I will get alligator skin, finger cuts, mouth sores, facial hair, darker eyebrows, longer eyelashes, a little hair loss, but no finger/feet tingling......I told Dr. K. the reason that I didn't want to ever do chemo again because of the last two cycles...she found out that it was the most aggressive approach and if it were to be used again, it would be a much lower dosage so my body could handle the side effects. I can still do the chemo in Sparta.
Right now = no hepatic arterial pump will be 'installed'....if I need chemo for these two new lesions than why bother with the pump as the chemo will also get the two lesions in my liver (which have increased in size from last month -- not alot -- but they still got bigger). I will post my scan results in another blog. They (Sloan) uses a little different language as Sparta...which is a bit harder to understand.
We left the city about 6 and decided to meet Nicholas at a restaurant in Dover (his choice) to celebrate his 28th birthday!!! Sam joined us (as she had to work until 4 pm), and Bre joined us as well. It was a great and happy time!!! Paul had to watch what he ate due to his 'new' food allergies and we all shared two little dessert cakes.
I was telling Paul that I feel really bad for him...he is my son - I am his mother...for him to have to hear all this 'bad' news each and every time...I know it is so stressful to him. Charlie was a bit upset that I felt worse for Paul and not him...I know the love for your very own child is a little different than the love for your spouse....It seems to be equal but I still think it's a little different. The worst part is that they say that they feel worse for me....
When we got home I received a note card from one of my 'old secretarial friends' that lives down in Florida (we've kept in touch). This note came at the perfect time!!! She enclosed a poem that a oncologist in Fl. wrote to his patients 10 years ago. It was printed again in their local newspaper by a cancer survivor gynecologist. I will post that poem separately.
I'm human, first I cry, then wonder where God is...then I get this note in the mail and this morning I read an email from my 'old time school mate' that was a prayer...timing couldn't have been better!!!!
I have one other thing that urks me....If I have to wait in the waiting room for over an hour to see and talk to a doctor...why on earth - can't they call you into their office and let you know what the test results are - good or bad news....put you in another room --- so you can cry or just let what they said - sink in! Rather than you waiting all that time to see you and then they say this to you - how do they expect you to be logical at that point??? My first response was -- I'm done! I don't want to do anything!!! Of course after 'letting go' a few minutes later....I was ready to fight!!! and do whatever is needed.
The doctor did say she sees this very hopeful...as my CEA is 10 and when I began going to Sloan last year for the first liver resection my number was up in the 200's...so she really thinks that I can do this with chemo and then have the pump 'installed'....
Tuesday, July 3, 2012
Thursday, June 28, 2012
Thursday, June 28th
Another l-0-n-g day! We (Paul and I) left the house at 12:30 - to get the train from Secaucus and make my first appointment at 2:50....Arrived at Secaucus parking lot...and they were full! Now where to go....home is where I originally wanted to be....buy we went to Hoboken....lots of traffic on the side streets getting to the station, but we made it by 2 pm. Nice station too! Took the Path to Lexington Ave...then another subway - to....??? - Thank goodness for Paul! I hadn't a clue as to were we were going! Anyway, we arrived 5 minutes late...which didn't matter because there was a roomful of people already waiting! About 15 minutes later a nurse came out to give me 'my drink'. It was a raspberry liquid....told her that I've never had that before - just the 'white' barium drink... She checked her records and came back with two 'plain' drinks...I've always had 'vanilla'....Those drinks aren't all that bad....I asked the nurse why I had two CT scans scheduled...she said it was only one scan but they just wanted to make sure I arrived at least 90 minutes earlier to drink....so, there I sat, again!
Paul has been having a flair up of Lyme's and he was going to go to an accupuncturist in Brooklyn or the Bronx (another 45 minute train ride from where we were)....I asked him to stay with me...but then seeing how long we were waiting, I told him to go and I'd probably meet up with him on the next scheduled appointment....I'd text him to let him know when I arrived...
CT scans are really so easy...other than the drink and waiting. I've had CT scans before in Newton/Sparta and was able to drink one whole container the night before and then half of the other in the morning and then finish it at the facility....this was different....drank the entire two bottles right then and there. The scan alone takes about 10 minutes. I'm allergic to the Contrast Iodine...so I only had to drink.
I went off to my next appointment - MRI, on the 11th floor - different part of the building - arriving at 5 pm....scheduled appointment was for 5:30...guess what....I waited - again! They took me in about 6:15 and Paul wasn't there yet....Then I waited - probably another hour - in the patient waiting room --- alone!!! Just waiting is exhausting!!!
This MRI was done a little differently...my head went in first - meaning -- I was really inside this scanner!!! Thank goodness I don't get closapobic!!!! They put ear plugs in and I don't think my right one was in deep enough...that machine is sooo loud! but instead of complaining...I let it be. When they pulled me out to give me the IV I was able to move my arms down from being over my head for about 20 minutes or maybe even more....so I adjusted the ear plugs..worked so much better! The worst of this is holding your breath! Majority of the time I was asked to hold my breath for 30 seconds! I learned: Take a deep breath, blow a little out, then hold it...It is so much easier than holding it for 30 seconds! -- try it now...which is easier for you? Remember that you are enclosed in this machine too....
Finally done - at 8 pm!!!! The MRI takes about 40 minutes....
We came right home...or I should say we left the city afterwards...with Paul not being able to eat anything really good....he said I should try this pizza place in Hoboken - take out and I would eat it in the car on our way home, which I didn't mind at all....Pizza WAS really good! Considering I ate a scrambled egg and slice of toast all day!
We arrived home at 10 pm!!!!! Talk about an exhausting day!!!
We go back to the city on Monday, July 2nd to talk to Dr. Kemeny about this hepatic adrienal pump and how the chemo will be administered - yada, yada...and to make sure the cancer is still just in the liver.
In 4 days - back to the city...appointment is for 2:30....I am assuming I will be seen about 3:30/4:00 and then we will have to eat in the city or leave right then and there so we don't hit traffic - on the subway or Rt. 3/Rt. 80....This appointment is at the cancer center - only one subway and it leaves you right off in front of the building.
That's it! Talk about a 'journey'!!! Maybe I should have changed my blog site name to Dorothy's Adventures...na, that would be just as bad! hows, Commuting along with Dorothy?....na, I'll just keep it the same as it is!
Paul has been having a flair up of Lyme's and he was going to go to an accupuncturist in Brooklyn or the Bronx (another 45 minute train ride from where we were)....I asked him to stay with me...but then seeing how long we were waiting, I told him to go and I'd probably meet up with him on the next scheduled appointment....I'd text him to let him know when I arrived...
CT scans are really so easy...other than the drink and waiting. I've had CT scans before in Newton/Sparta and was able to drink one whole container the night before and then half of the other in the morning and then finish it at the facility....this was different....drank the entire two bottles right then and there. The scan alone takes about 10 minutes. I'm allergic to the Contrast Iodine...so I only had to drink.
I went off to my next appointment - MRI, on the 11th floor - different part of the building - arriving at 5 pm....scheduled appointment was for 5:30...guess what....I waited - again! They took me in about 6:15 and Paul wasn't there yet....Then I waited - probably another hour - in the patient waiting room --- alone!!! Just waiting is exhausting!!!
This MRI was done a little differently...my head went in first - meaning -- I was really inside this scanner!!! Thank goodness I don't get closapobic!!!! They put ear plugs in and I don't think my right one was in deep enough...that machine is sooo loud! but instead of complaining...I let it be. When they pulled me out to give me the IV I was able to move my arms down from being over my head for about 20 minutes or maybe even more....so I adjusted the ear plugs..worked so much better! The worst of this is holding your breath! Majority of the time I was asked to hold my breath for 30 seconds! I learned: Take a deep breath, blow a little out, then hold it...It is so much easier than holding it for 30 seconds! -- try it now...which is easier for you? Remember that you are enclosed in this machine too....
Finally done - at 8 pm!!!! The MRI takes about 40 minutes....
We came right home...or I should say we left the city afterwards...with Paul not being able to eat anything really good....he said I should try this pizza place in Hoboken - take out and I would eat it in the car on our way home, which I didn't mind at all....Pizza WAS really good! Considering I ate a scrambled egg and slice of toast all day!
We arrived home at 10 pm!!!!! Talk about an exhausting day!!!
We go back to the city on Monday, July 2nd to talk to Dr. Kemeny about this hepatic adrienal pump and how the chemo will be administered - yada, yada...and to make sure the cancer is still just in the liver.
In 4 days - back to the city...appointment is for 2:30....I am assuming I will be seen about 3:30/4:00 and then we will have to eat in the city or leave right then and there so we don't hit traffic - on the subway or Rt. 3/Rt. 80....This appointment is at the cancer center - only one subway and it leaves you right off in front of the building.
That's it! Talk about a 'journey'!!! Maybe I should have changed my blog site name to Dorothy's Adventures...na, that would be just as bad! hows, Commuting along with Dorothy?....na, I'll just keep it the same as it is!
Monday, June 18, 2012
Tuesday, June 18th
Received a call from the nurse for Dr. Kemery today telling me they had set up my next appointment to have the scans....of course it isn't the same day as the appointment with her...she wants this done the week before I see her so she can look them over.
I am now scheduled for Wednesday the 27th to have, what looks like, three (3) scans --- beginning at 3:20 for a CT scan; 4:00 for (another) CT scan; and 5:30 for an MRI....of course this call came while I was cutting hair so I forgot to ask if I have to 'prep' for it in any way. I will call tomorrow to find out.
These scans will be done at the hospital....meaning two (2) subway trains and walking three (3) blocks....it's kind of good that it's later in the day. Once I'm done with the MRI - I'm sure we can come straight home - rather than eating out again to avoid the traffic......I have to look at this in a positive way! You think by now I wouldn't mind eating out!!!
I called the dentist today to get an appointment before this surgery - but they are on vacation this week....now to wait another week.......I'm not really sure I enjoy this waiting game!
I am now scheduled for Wednesday the 27th to have, what looks like, three (3) scans --- beginning at 3:20 for a CT scan; 4:00 for (another) CT scan; and 5:30 for an MRI....of course this call came while I was cutting hair so I forgot to ask if I have to 'prep' for it in any way. I will call tomorrow to find out.
These scans will be done at the hospital....meaning two (2) subway trains and walking three (3) blocks....it's kind of good that it's later in the day. Once I'm done with the MRI - I'm sure we can come straight home - rather than eating out again to avoid the traffic......I have to look at this in a positive way! You think by now I wouldn't mind eating out!!!
I called the dentist today to get an appointment before this surgery - but they are on vacation this week....now to wait another week.......I'm not really sure I enjoy this waiting game!
Friday, June 15, 2012
Friday, June 15, 2012
We - Paul, Charlie and I - left for my appointment with Dr. Allen (surgeon) at 10 am....got to MSKCC a few minutes early which was good because Paul had a casting call (I'll never get acting vocab right) at 1 pm - downtown and we were - uptown! Waited for over an hour, then went for the pre-admission testing and waited over an hour, again! I was done at 5 pm -- RUSH HOUR!!! so we went to dinner...great restaurant and very good food. Even though I would have rather been home eating my own cooked dinner I enjoyed it. Charlie laughed and said this is the 3rd time we've eaten out....because of my NY appointments!!! Arrived home at 8:45 pm! The dogs were so excited to see Charlie/us!!!
Dr. Allen told me about this hepatic arterial pump....it's the size of a hockey puck and it is inserted in the belly - left side, between my waist and hip. He has to do a 'full' cut! due to scar tissue - meaning I will be in the hospital for 4 - 6 days and then about a month recovering....but in two weeks after the surgery, the staples come out and I should get my first dose of chemo. I'm going to try to get the chemo there (in NY) then in two weeks go to Sparta to have it flushed...then two weeks later -- back to the city....etc.....in 3 to 6 months they will do an MRI (this pump is titanium and not metal so they can do that - but they prefer to do a CT scan but being that I'm allergic to the contrast iodine...they can't!)...to see if they can stop the chemo for a short time or continue. Dr. Allen suggested that I see this oncologist BEFORE my surgery - to discuss the chemo and empty/flushing....I believe he said that if I go to Sparta she will get someone from Sloan to train someone in Sparta....something like that! I'd much rather go to Sparta rather than going back and forth to NY.... It's so draining! - all this waiting! The chemo only takes about 10 to 15 minutes to administer - then your done! Now, depending on the time I have an appointment.....we'll see if its good or not!
This is so depressing....not for me, I can handle this - scarred body! but I feel so badly for my family! Coming to the appointments with me and just having to be around for me and worrying. I am so use to do my own thing - whenever - and now I have to depend on someone....and they have to re-arrange their schedules....life isn't fair! When I told Paul this - he said he didn't and would never mind doing this for his mom!!! How sweet was that!!!! and I'm sure he really meant it!
I asked Dr. Allen why we didn't do this in the first place...during or around the liver resection...he said because I lived too far (my excuse) and Sloan is the only hospital that does these pumps!!! Oh, he also said while he is inserting the cath into the artery he will try to ablate the two lesions...easier to ablate while I'm 'open' - he can actually see what he's doing rather than what Dr. Brown did...
This pump is one of the newest tech developments with colon cancer in the liver and they say that it has extended the life span of this type of cancer by ten years!
Okay, I left you with the positive thoughts!!! and much more are needed!!!!! I still believe in miracles!!!!
Dr. Allen told me about this hepatic arterial pump....it's the size of a hockey puck and it is inserted in the belly - left side, between my waist and hip. He has to do a 'full' cut! due to scar tissue - meaning I will be in the hospital for 4 - 6 days and then about a month recovering....but in two weeks after the surgery, the staples come out and I should get my first dose of chemo. I'm going to try to get the chemo there (in NY) then in two weeks go to Sparta to have it flushed...then two weeks later -- back to the city....etc.....in 3 to 6 months they will do an MRI (this pump is titanium and not metal so they can do that - but they prefer to do a CT scan but being that I'm allergic to the contrast iodine...they can't!)...to see if they can stop the chemo for a short time or continue. Dr. Allen suggested that I see this oncologist BEFORE my surgery - to discuss the chemo and empty/flushing....I believe he said that if I go to Sparta she will get someone from Sloan to train someone in Sparta....something like that! I'd much rather go to Sparta rather than going back and forth to NY.... It's so draining! - all this waiting! The chemo only takes about 10 to 15 minutes to administer - then your done! Now, depending on the time I have an appointment.....we'll see if its good or not!
This is so depressing....not for me, I can handle this - scarred body! but I feel so badly for my family! Coming to the appointments with me and just having to be around for me and worrying. I am so use to do my own thing - whenever - and now I have to depend on someone....and they have to re-arrange their schedules....life isn't fair! When I told Paul this - he said he didn't and would never mind doing this for his mom!!! How sweet was that!!!! and I'm sure he really meant it!
I asked Dr. Allen why we didn't do this in the first place...during or around the liver resection...he said because I lived too far (my excuse) and Sloan is the only hospital that does these pumps!!! Oh, he also said while he is inserting the cath into the artery he will try to ablate the two lesions...easier to ablate while I'm 'open' - he can actually see what he's doing rather than what Dr. Brown did...
This pump is one of the newest tech developments with colon cancer in the liver and they say that it has extended the life span of this type of cancer by ten years!
Okay, I left you with the positive thoughts!!! and much more are needed!!!!! I still believe in miracles!!!!
Wednesday, June 6, 2012
just found this....re: arterial pump
HAI Pump (Hepatic Arterial Infusion Pump)
Cancer/BMT/Hematology
Your doctor has recommended a chemotherapy (chemo) plan for the colon cancer that has spread to your liver. This handout will explain the pump that delivers chemo and how to care for yourself after the pump is placed.
What is an HAI pump?
A hepatic arterial infusion pump is an implanted device about the size of a hockey puck. It is designed to give chemo at a constant rate to the liver. This method allows for higher doses of chemo to the liver. Exposure of normal cells to chemo is reduced. This also helps to limit some of the side effects.
How does the HAI pump work?
The HAI pump has two chambers, an inner chamber also called the drug chamber and the sealed outer chamber that contains an inert gas. The gas is warmed by the temperature of the body. This causes the gas to expand and increase the pressure on the drug chamber. This pressure causes the medicine to flow out of the drug chamber. It then flows through a filter, out of the pump via a small tube, and to the liver. There are no batteries in the pump.
How is the HAI pump placed?
The HAI pump is placed during surgery. The implant is performed under general anesthesia. An incision is made under the rib cage for placement of the pump catheter. A second incision is made on the right or left side of the abdomen for placement of the pump.
If the gall bladder is still in place, it will be removed before placement of the pump. This will prevent irritation of the gall bladder caused by the chemo.
How is the pump filled?
A doctor will insert a needle through the skin into the pump. A syringe with chemo will be attached to the needle. The chemo will then be injected in the pump.
Is the HAI pump right for you?
Your doctor will decide if an HAI pump is an option for you based on the extent of the cancer and your general health. There are guidelines that you must be willing and able to follow to be able to use the pump.
For most patients, you must be willing and able to travel to UW Hospital every 2 weeks for pump fills.
You must keep all of your scheduled doctor and lab visits.
You must be able to lie still when the pump is accessed to avoid leakage of chemo.
Watch for signs of a fever. Call your doctor if you have one. Prolonged fever can affect the flow rate of the pump.
Do not use a heating pad or hot water bottle over the pump site, or sit in a hot tub. The heat will cause the pump to flow faster.
Carry the Patient ID card at all times in case of an emergency. Carry the ID card through airport security.
Avoid contact sports that could result in a blow to the abdomen.
Avoid scuba diving. The increased pressure will affect the flow rate of the pump. You may swim or snorkel.
Contact your doctor if you are going to travel by air. The cabin pressure of the plane may affect pump flow rate.
Inform your doctor if you are visiting or moving to higher altitude. This can affect the flow rate of the pump.
How often will the HAI pump be filled?
Your surgeon will fill the pump in the operating room. The schedule listed below will be followed for refills:
24 – 48 hours before discharge from the hospital a nurse from the Oncology Clinic will come to your room to flush the pump.
Date ________________________
2 weeks later you will have an appointment in the Chemo Room of the Oncology Clinic (Atrium clinic J3/2). The nurse will empty the pump, measure the left over liquid, and refill the pump with heparinized saline.
Date ________________________
2 weeks later (4 weeks after the 1st pump fill), you will have lab work and a visit with your oncologist. The pump will be filled with chemo for the first time. If you have not fully recovered from surgery, the start of chemo may be delayed. If that is the case, your pump will be filled with heparinized saline.
Date_________________________
1 week later you will have lab work done to check for liver toxicity. This may be done at a local lab if you live far from UW Hospital.
Date_________________________
1 week later (2 weeks after the start of the chemo infusion) you will return to the Chemo Room for the pump to be emptied and refilled with heparinized saline.
Date_________________________
2 weeks off
Return to the Oncology Clinic for lab work and a visit with your doctor. You will restart the 2 weeks on, 2 weeks off chemo cycle.
Date__________________________
There may be a time when you and your doctor feel you need a break from chemo, or you want to take a vacation that would interfere with the schedule outlined above. If this happens, the pump may be filled with glycerin which will allow for pump fills up to every 3 months.
The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited. Last Updated: 02/17/2010 Copyright © 02/17/2010 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. UWH #6619 Print Health Fact For You
Cancer/BMT/Hematology
Your doctor has recommended a chemotherapy (chemo) plan for the colon cancer that has spread to your liver. This handout will explain the pump that delivers chemo and how to care for yourself after the pump is placed.
What is an HAI pump?
A hepatic arterial infusion pump is an implanted device about the size of a hockey puck. It is designed to give chemo at a constant rate to the liver. This method allows for higher doses of chemo to the liver. Exposure of normal cells to chemo is reduced. This also helps to limit some of the side effects.
How does the HAI pump work?
The HAI pump has two chambers, an inner chamber also called the drug chamber and the sealed outer chamber that contains an inert gas. The gas is warmed by the temperature of the body. This causes the gas to expand and increase the pressure on the drug chamber. This pressure causes the medicine to flow out of the drug chamber. It then flows through a filter, out of the pump via a small tube, and to the liver. There are no batteries in the pump.
How is the HAI pump placed?
The HAI pump is placed during surgery. The implant is performed under general anesthesia. An incision is made under the rib cage for placement of the pump catheter. A second incision is made on the right or left side of the abdomen for placement of the pump.
If the gall bladder is still in place, it will be removed before placement of the pump. This will prevent irritation of the gall bladder caused by the chemo.
How is the pump filled?
A doctor will insert a needle through the skin into the pump. A syringe with chemo will be attached to the needle. The chemo will then be injected in the pump.
Is the HAI pump right for you?
Your doctor will decide if an HAI pump is an option for you based on the extent of the cancer and your general health. There are guidelines that you must be willing and able to follow to be able to use the pump.
For most patients, you must be willing and able to travel to UW Hospital every 2 weeks for pump fills.
You must keep all of your scheduled doctor and lab visits.
You must be able to lie still when the pump is accessed to avoid leakage of chemo.
Watch for signs of a fever. Call your doctor if you have one. Prolonged fever can affect the flow rate of the pump.
Do not use a heating pad or hot water bottle over the pump site, or sit in a hot tub. The heat will cause the pump to flow faster.
Carry the Patient ID card at all times in case of an emergency. Carry the ID card through airport security.
Avoid contact sports that could result in a blow to the abdomen.
Avoid scuba diving. The increased pressure will affect the flow rate of the pump. You may swim or snorkel.
Contact your doctor if you are going to travel by air. The cabin pressure of the plane may affect pump flow rate.
Inform your doctor if you are visiting or moving to higher altitude. This can affect the flow rate of the pump.
How often will the HAI pump be filled?
Your surgeon will fill the pump in the operating room. The schedule listed below will be followed for refills:
24 – 48 hours before discharge from the hospital a nurse from the Oncology Clinic will come to your room to flush the pump.
Date ________________________
2 weeks later you will have an appointment in the Chemo Room of the Oncology Clinic (Atrium clinic J3/2). The nurse will empty the pump, measure the left over liquid, and refill the pump with heparinized saline.
Date ________________________
2 weeks later (4 weeks after the 1st pump fill), you will have lab work and a visit with your oncologist. The pump will be filled with chemo for the first time. If you have not fully recovered from surgery, the start of chemo may be delayed. If that is the case, your pump will be filled with heparinized saline.
Date_________________________
1 week later you will have lab work done to check for liver toxicity. This may be done at a local lab if you live far from UW Hospital.
Date_________________________
1 week later (2 weeks after the start of the chemo infusion) you will return to the Chemo Room for the pump to be emptied and refilled with heparinized saline.
Date_________________________
2 weeks off
Return to the Oncology Clinic for lab work and a visit with your doctor. You will restart the 2 weeks on, 2 weeks off chemo cycle.
Date__________________________
There may be a time when you and your doctor feel you need a break from chemo, or you want to take a vacation that would interfere with the schedule outlined above. If this happens, the pump may be filled with glycerin which will allow for pump fills up to every 3 months.
The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited. Last Updated: 02/17/2010 Copyright © 02/17/2010 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. UWH #6619 Print Health Fact For You
Wednesday, June 6th
I made an appointment with Dr. Allen (surgeon at Sloan Kettering, NYC) on Friday, June 15th. I also had logged onto their web site and found a video that explains this 'hepatic arterial infusion pump'....if you're interested...at least to see the 'size of the pump' and to see where it is implanted you can go to this site to view the 8 minute video and it also explains the who, what and where of this...
http://www.mskcc.org/videos/treating-liver-metastases-hepatic-arterial-infusion-therapy
Sam went onto the site yesterday and couldn't view it....so hopefully it will work for you.
I also found out the incision is 6 (six) inches long....hmmmm and there is a hospital stay of a few days -- double hmmmm.... Now I'm hoping that I will be able to eat while I'm there...they really do have such a good menu!! Gotta find the laugh in there!!!
http://www.mskcc.org/videos/treating-liver-metastases-hepatic-arterial-infusion-therapy
Sam went onto the site yesterday and couldn't view it....so hopefully it will work for you.
I also found out the incision is 6 (six) inches long....hmmmm and there is a hospital stay of a few days -- double hmmmm.... Now I'm hoping that I will be able to eat while I'm there...they really do have such a good menu!! Gotta find the laugh in there!!!
Monday, June 4, 2012
Monday, June 4th...visit with Dr. May
Well, after waiting a mere hour and fifteen minutes - then another fifteen...I met with Dr. May. I can't say enough about her! She is such a positive and special person!!! She did 'think' I should do chemo again....but decided that this 'arterial pump' may do the trick. I asked a ton of questions and at the end I asked her if I could contact the woman that has this pump in her already. She called her and asked if it was okay and I called her once I got home.
Now, this pump is 'surgically' implanted -- all the info I have is what this woman Pat said -- she has hers on her left side of her belly - between her waist and hip/pelvic area and it's the size of a hockey puck but much thinner. She also still has the port in (that I can't figure out because she isn't getting regular chemo). She had her pump put in when she had her liver resection. She was in the hospital for 6 days - but that was mostly for the recovery of the liver resection...she did say that they probably keep you overnight to make sure that it is working. She is 65 years old and started her chemo treatments in Jan. 2009. She had a colon resection, then chemo, then the liver resection and pump put in the same time. She had a lot of problems with her chemo and feels great having this new procedure! She goes back and forth to Sloan Kettering (and Dr. Allen did her surgery too). She went every two weeks to have the chemo put in the pump which took about 10 minutes and then she was going back to Sparta to have it emptied but it ended up getting clogged so she decided to keep going back to the city for that. This is the part I didn't really understand....I think she said she began with getting the chemo into the pump then two weeks later she had it emptied....I think she said she waited another two weeks to do it all over again...and the empty/flush took about the same time = 10 minutes. She traveled via automobile with a friend. She said she felt fine afterwards and everytime she and her friend would go places in the city...never feeling ill or tired....with the chemo she felt terrible!
Pat talked alot so sometimes I got a little confused...I thought she said she didn't feel well and they lowered the dose...but I think that was when she was having regular chemo. She did say that she hated the 'back pack pump'....me too! She said that was the worst...how to carry it when you were sleeping and her dog hated the beeping sound. Pat did say that when she goes into a building that they have the alarm/wand...she is always 'going off'!!! and has to tell them she has this.
All in all....what she said is very positive. Paul is out today at a job and when he comes home I will find out what his schedule is and then I will contact Dr. Allen in NY and I'm sure we will set a date for this surgery implant....Pat said another doctor implanted this pump so maybe Dr. Allen may want the new surgeon to meet me to set the date. Pat said that this pump stays implanted for 5 (five) years....that's something I'm not looking forward to. She did say it does protrude a little...doesn't really matter as I always wear my blouses/shirts on the long side.
Oh and Pat is disease free for one year!!! She loves to bake and eat what she makes - so she does consume lots of sugar! I remember her now from the cancer center. She had been in there while I was waiting and I remember her always talking about what she was baking and always brought 'stuff' in for the office....she about my size!
I also asked Dr. May if I can begin the Nutrisystem...she said 'yes'. I had gone on that several years ago and it did help me loose weight....they give you ALL the food you are to eat in (I think) a months time...which is hard to put it someplace! Gives you the snacks and desserts...nothing to weigh - just heat and eat or just eat out of the bag! I will 'tell' Charlie I am going to order this again --- the last time I did it...I ordered for 3 months or maybe it was 4 months but never finished the one month worth of food and he was still working and brought it all in for his guys - they ate it -- as a snack!!! I'm just hoping Charlie doesn't say 'no' because of that....one will see later!!!
Now, this pump is 'surgically' implanted -- all the info I have is what this woman Pat said -- she has hers on her left side of her belly - between her waist and hip/pelvic area and it's the size of a hockey puck but much thinner. She also still has the port in (that I can't figure out because she isn't getting regular chemo). She had her pump put in when she had her liver resection. She was in the hospital for 6 days - but that was mostly for the recovery of the liver resection...she did say that they probably keep you overnight to make sure that it is working. She is 65 years old and started her chemo treatments in Jan. 2009. She had a colon resection, then chemo, then the liver resection and pump put in the same time. She had a lot of problems with her chemo and feels great having this new procedure! She goes back and forth to Sloan Kettering (and Dr. Allen did her surgery too). She went every two weeks to have the chemo put in the pump which took about 10 minutes and then she was going back to Sparta to have it emptied but it ended up getting clogged so she decided to keep going back to the city for that. This is the part I didn't really understand....I think she said she began with getting the chemo into the pump then two weeks later she had it emptied....I think she said she waited another two weeks to do it all over again...and the empty/flush took about the same time = 10 minutes. She traveled via automobile with a friend. She said she felt fine afterwards and everytime she and her friend would go places in the city...never feeling ill or tired....with the chemo she felt terrible!
Pat talked alot so sometimes I got a little confused...I thought she said she didn't feel well and they lowered the dose...but I think that was when she was having regular chemo. She did say that she hated the 'back pack pump'....me too! She said that was the worst...how to carry it when you were sleeping and her dog hated the beeping sound. Pat did say that when she goes into a building that they have the alarm/wand...she is always 'going off'!!! and has to tell them she has this.
All in all....what she said is very positive. Paul is out today at a job and when he comes home I will find out what his schedule is and then I will contact Dr. Allen in NY and I'm sure we will set a date for this surgery implant....Pat said another doctor implanted this pump so maybe Dr. Allen may want the new surgeon to meet me to set the date. Pat said that this pump stays implanted for 5 (five) years....that's something I'm not looking forward to. She did say it does protrude a little...doesn't really matter as I always wear my blouses/shirts on the long side.
Oh and Pat is disease free for one year!!! She loves to bake and eat what she makes - so she does consume lots of sugar! I remember her now from the cancer center. She had been in there while I was waiting and I remember her always talking about what she was baking and always brought 'stuff' in for the office....she about my size!
I also asked Dr. May if I can begin the Nutrisystem...she said 'yes'. I had gone on that several years ago and it did help me loose weight....they give you ALL the food you are to eat in (I think) a months time...which is hard to put it someplace! Gives you the snacks and desserts...nothing to weigh - just heat and eat or just eat out of the bag! I will 'tell' Charlie I am going to order this again --- the last time I did it...I ordered for 3 months or maybe it was 4 months but never finished the one month worth of food and he was still working and brought it all in for his guys - they ate it -- as a snack!!! I'm just hoping Charlie doesn't say 'no' because of that....one will see later!!!
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