This one is a two parter...
I had been dealing with a congestion cold/sinus thing for just about a week before my CT Scan, which was on the 11th of December. That particular Saturday though I was really sick; on top of the other symptoms, I had a high fever, and chills that were shaking my body uncontrollably - which isn't a good thing for imaging. While in the imaging room, with my lips blue and body convulsing, I asked the radiology tech how they would determine which "shadows" were tumor and which were mucas from the congestion that I had been dealing with. The answer wasn't very promising, he responded that both would show up as similar shadows and that he there wasn't any way to be absolutely sure. Great... so home to bed I went.
On Monday I emailed Dr. H's assistant and asked her to give him a heads up about the congestion while reviewing my scan. She responded with: "That could explain some of what the scan showed". This answer made me nervous, it sounds like a lot was found.
On Thursday we arrived for our appointment and was greeted with pretty good news. On one hand I found out that I have pneumonia, but on the other hand the tumors remained the same size. The cardinal rule with cancer is no growth = good news; I of course would have loved it if everything was perfectly clean, but I'm still working towards that one! We met with my nurse to flush the port and have blood work done, and then we were off. It was too late to fill the Zpak script for the pneumonia by the time we got home, so Friday would have to do.
Upcoming Appts:
Tues. Jan 25th - Check in w/doc and flush port
Keep in mind that "no news is good news"; I don't see myself writing before the 26th of January, and even then I'm not sure I'l have much to report. John Michael and I wish you all (who ever you may be) the Happiest of Holidays!!
Saturday, December 18, 2010
Sunday, November 21, 2010
Round 2, Treatment 6+2 = A Much Deserved Break
A much deserved break is the plan anyways! Friday's chemo session began with the aggrivating local lab on Wednesday, then trying to get the results on Thursday.. but after tracking down the "go ahead" for Friday, all went well.
A great thanks to Julie, Rob & the Fiore kids; Donny, Chloe & their girls; and as always for organizing, Uncle John Nyhan, for our pre-chemo stay at the Radisson Boston. I can't express enough how staying in Boston reduces the stress of the day of chemo, it means a great deal to us.
The day went as expected, then it was off to Chelmsford to pick up the Neulasta. Once finally home I was glad to have an extra dose of the granistron for the first night. I continue to fight the nausea, soreness, fatigue, etc. that goes with the week following chemo, but this time with the thought that it will be a while until I have to do it again. The length of the break will determine how each scan looks from here on out. Keep those prayers going and fingers crossed!!
A special Happy Thanksgiving from us to all of you!! xo
UPCOMING APPTS:
12/11/10: CT Scan
12/16/10: CT Scan Results
12/16/10: Flush the port (must be done monthly when not being used)
A great thanks to Julie, Rob & the Fiore kids; Donny, Chloe & their girls; and as always for organizing, Uncle John Nyhan, for our pre-chemo stay at the Radisson Boston. I can't express enough how staying in Boston reduces the stress of the day of chemo, it means a great deal to us.
The day went as expected, then it was off to Chelmsford to pick up the Neulasta. Once finally home I was glad to have an extra dose of the granistron for the first night. I continue to fight the nausea, soreness, fatigue, etc. that goes with the week following chemo, but this time with the thought that it will be a while until I have to do it again. The length of the break will determine how each scan looks from here on out. Keep those prayers going and fingers crossed!!
A special Happy Thanksgiving from us to all of you!! xo
UPCOMING APPTS:
12/11/10: CT Scan
12/16/10: CT Scan Results
12/16/10: Flush the port (must be done monthly when not being used)
Friday, October 29, 2010
Treatment 6 + 1
First and foremost, Thank you Doherty family for putting us up in Boston Thursday night, and as always thank you Uncle John for organizing it all!!
Just a quick run down, there isn't anything you all haven't read before. We arrived, went for vitals, blood, saw Dr. H, then we were off to the treatment area. The skin where the port is located looks a bit irritated, but everything still looks good and is working smoothly! Once I was all hooked up I received a couple hours of anti-nausea meds and a few hours of chemo; we were out of there around 3:30p. I was given additional anti-nausea meds for tonight, so that unlike last time hopefully we can keep the nausea & vomiting under control and tomorrow morning John will give me the neulast to boost my white count.
Have a Happy Halloween Everyone!!
UPCOMING APPTS:
Fri. Nov. 5th - possible blood work
Wed. Nov. 17th- pre-chemo blood work
Fri. Nov. 19th- chemo (if blood counts look good)
Just a quick run down, there isn't anything you all haven't read before. We arrived, went for vitals, blood, saw Dr. H, then we were off to the treatment area. The skin where the port is located looks a bit irritated, but everything still looks good and is working smoothly! Once I was all hooked up I received a couple hours of anti-nausea meds and a few hours of chemo; we were out of there around 3:30p. I was given additional anti-nausea meds for tonight, so that unlike last time hopefully we can keep the nausea & vomiting under control and tomorrow morning John will give me the neulast to boost my white count.
Have a Happy Halloween Everyone!!
UPCOMING APPTS:
Fri. Nov. 5th - possible blood work
Wed. Nov. 17th- pre-chemo blood work
Fri. Nov. 19th- chemo (if blood counts look good)
Tuesday, October 19, 2010
Excellent News
Today we met with Dr. H to get the results of my post 6th treatment CT Scan... excellent news! The carbo/taxol combo is still working it's magic!
The liver has no visual tumors, the mass in the spleen has not changed- they are beginning to think is an unrelated mass (meaning that it is possibly not cancer), the spot in my mid chest shows significant shrinkage - what is left could be just scar tissue from the surgery, and the tumor on the pleura has shrunk down to 8mm!
We discussed this "positive dilemma", as Dr. H called it, thoroughly. It is unknown whether or not receiving two additional treatments after the standard six will actually be useful; but we're going to find out! I refuse to not receive treatment when the uncertainty of additional chemo could equally be positive as it could be negative. When I say negative, I am referring to the beating my body takes during each chemo treatment, including my blood levels; but I am convinced that if I'm willing to accept this extra fight, then so is my body! Following these next two treatments I will get another CT Scan to hopefully learn that things are looking even better.
I asked Dr. H if revisiting the idea of radiation was a possibility. When we first found out the cancer had returned in full force radiation was not a feasible treatment, due to the fact that I had tumors in multiple areas; now that I am down to only one known visible cancerous tumor it makes sense to me to zap this thing with all that we have available. I however, am not a doctor (shocking I know), evidently hitting my lung with radiation could have several negative side effects that would out weigh the benefits. Dr. H did say that he would speak with the radiation oncologist to get his views on the situation.
Upcoming Appts:
Fri. Oct 29th - Chemo
The liver has no visual tumors, the mass in the spleen has not changed- they are beginning to think is an unrelated mass (meaning that it is possibly not cancer), the spot in my mid chest shows significant shrinkage - what is left could be just scar tissue from the surgery, and the tumor on the pleura has shrunk down to 8mm!
We discussed this "positive dilemma", as Dr. H called it, thoroughly. It is unknown whether or not receiving two additional treatments after the standard six will actually be useful; but we're going to find out! I refuse to not receive treatment when the uncertainty of additional chemo could equally be positive as it could be negative. When I say negative, I am referring to the beating my body takes during each chemo treatment, including my blood levels; but I am convinced that if I'm willing to accept this extra fight, then so is my body! Following these next two treatments I will get another CT Scan to hopefully learn that things are looking even better.
I asked Dr. H if revisiting the idea of radiation was a possibility. When we first found out the cancer had returned in full force radiation was not a feasible treatment, due to the fact that I had tumors in multiple areas; now that I am down to only one known visible cancerous tumor it makes sense to me to zap this thing with all that we have available. I however, am not a doctor (shocking I know), evidently hitting my lung with radiation could have several negative side effects that would out weigh the benefits. Dr. H did say that he would speak with the radiation oncologist to get his views on the situation.
Upcoming Appts:
Fri. Oct 29th - Chemo
Saturday, October 2, 2010
# six & sick
Thank you again Mum & Dad P for putting us up in another wonderful Boston hotel (this time was the Onyx) and for dinner the night before chemo, it means so much to us and eases our stress by millions!! xoxo As always, thank you Uncle John Nyhan for organizing everything.
Even though I had my blood work done a couple days before chemo, it was necessary to recheck my counts before administering chemo - everything came out right where it needed to be - thank you neulasta!
The big surprise of the day was that my nurse wasn't in! She did however set us up with my second favorite nurse, but that poor thing was having a tough day on her own, so we ended up having 5 or so different nurses throughout the day. I am convinced that one of my pre-anti nausea meds were missed, or maybe thats me just looking for an excuse, because everytime I count the ones administered, they all seem to be accounted for; nonetheless, I say this because I was nauseous all day and throwing up ALL night. I am still very sick, but at least for now the vomiting has stopped. (knock on wood)
Dr. Hubby will again give me the neulasta shot to keep my counts up. The plan is to then get a CT Scan and figure it out from there, which will either be: go two more rounds of chemo, or give my body a break for a while, which we won't know until the 19th of Oct.
UPCOMING APPTS:
10/16: CT Scan
10/19: Results w/Dr. H
Even though I had my blood work done a couple days before chemo, it was necessary to recheck my counts before administering chemo - everything came out right where it needed to be - thank you neulasta!
The big surprise of the day was that my nurse wasn't in! She did however set us up with my second favorite nurse, but that poor thing was having a tough day on her own, so we ended up having 5 or so different nurses throughout the day. I am convinced that one of my pre-anti nausea meds were missed, or maybe thats me just looking for an excuse, because everytime I count the ones administered, they all seem to be accounted for; nonetheless, I say this because I was nauseous all day and throwing up ALL night. I am still very sick, but at least for now the vomiting has stopped. (knock on wood)
Dr. Hubby will again give me the neulasta shot to keep my counts up. The plan is to then get a CT Scan and figure it out from there, which will either be: go two more rounds of chemo, or give my body a break for a while, which we won't know until the 19th of Oct.
UPCOMING APPTS:
10/16: CT Scan
10/19: Results w/Dr. H
Thursday, September 9, 2010
Round #2, Treatment #5, Attempt #2
I forgot how miserable it is to get up so early and sit in hours of traffic to get and from BI with six hours of chemo in between, ugh! We've been spoiled the past four rounds!
After surprising everyone with my white count being so low last week (1100), I was sent home to recuperate for another six days. I was assured that my count would be up to par by today; however, this is me, and evidently, nothing is that easy. My count was a 1300 and is supposed to be 1500 for me to receive treatment (normally it is administered as long as your count is 1000, but they want to be safe with me). When my results came back the doctor was called to reevaluate the situation, Finally, we got the go-ahead.
It was smooth sailing from here! The port worked beautifully, and we were able to pump the meds in a bit faster without pain, which is always nice. Best of all insurance approved us to be able to pick up the Neulasta shot at the pharmacy and it will be administered by Dr. Hubby. (the Neulasta shot will keep my white count from dropping down too low.)
Upcoming Appts:
Friday, September 17th: Blood work
Friday, October 1: Dr. Appt & Chemo
After surprising everyone with my white count being so low last week (1100), I was sent home to recuperate for another six days. I was assured that my count would be up to par by today; however, this is me, and evidently, nothing is that easy. My count was a 1300 and is supposed to be 1500 for me to receive treatment (normally it is administered as long as your count is 1000, but they want to be safe with me). When my results came back the doctor was called to reevaluate the situation, Finally, we got the go-ahead.
It was smooth sailing from here! The port worked beautifully, and we were able to pump the meds in a bit faster without pain, which is always nice. Best of all insurance approved us to be able to pick up the Neulasta shot at the pharmacy and it will be administered by Dr. Hubby. (the Neulasta shot will keep my white count from dropping down too low.)
Upcoming Appts:
Friday, September 17th: Blood work
Friday, October 1: Dr. Appt & Chemo
Friday, September 3, 2010
Annoyed
I was excited to leave work on Thursday and head into the Marriott Longwarf Hotel; we had dinner, walked around Faniel Hall, a surprise of milk and cookies were delivered to our room, and we went swimming in the hotel pool. It was a wonderful, relaxing night... Thank you Mum and Dad Pelletier and Uncle John for setting it up!
Friday morning, chemo day, we made our stress-free way to BI. We were called back into the treatment section, with the great surprise that BI got fancy, new, comfortable treatment chairs (score!). My nurse accessed the port, in order to draw blood, this is where the complications arose. The port was not giving blood as it should and no one could figure out why... after much finagling, and making me sore, the blood viles were sent out, only to come back a half hour later with annoying results. Dr. H, who is on vacation, left instructions not to administer chemo if my CBC was lower than 1500, well my CBC came back at 1100 and even after a consult from the Dr. on call it was decided that it was too risky to do chemo this week. Again, the worry with this is that we are pushing five weeks without treatment, which gives the cancer the opportunity to become resistant; however, if chemo is given and my white count drops too low, I will be unable to fight off infections and will become very sick.
Other than the health issue that goes along with this, I am annoyed that we revolve our lives around all of the doctor and treatment appointments, and now everything has to be shuffled around or cancelled. We will return on Thursday 9/9 for blood work and chemo.
Upcoming Appt.:
Thurs. 9/9/10: Chemo
Friday morning, chemo day, we made our stress-free way to BI. We were called back into the treatment section, with the great surprise that BI got fancy, new, comfortable treatment chairs (score!). My nurse accessed the port, in order to draw blood, this is where the complications arose. The port was not giving blood as it should and no one could figure out why... after much finagling, and making me sore, the blood viles were sent out, only to come back a half hour later with annoying results. Dr. H, who is on vacation, left instructions not to administer chemo if my CBC was lower than 1500, well my CBC came back at 1100 and even after a consult from the Dr. on call it was decided that it was too risky to do chemo this week. Again, the worry with this is that we are pushing five weeks without treatment, which gives the cancer the opportunity to become resistant; however, if chemo is given and my white count drops too low, I will be unable to fight off infections and will become very sick.
Other than the health issue that goes along with this, I am annoyed that we revolve our lives around all of the doctor and treatment appointments, and now everything has to be shuffled around or cancelled. We will return on Thursday 9/9 for blood work and chemo.
Upcoming Appt.:
Thurs. 9/9/10: Chemo
Thursday, August 19, 2010
Two Posts In One: Scan & Results
"Colleen, what did you do this weekend?" Well, on Sunday John and I drove into BI so that I could get my first CT Scan using the femoral port that was put in almost two weeks ago, is still sore and held together with stitches. Exciting stuff, isn't it?
During our early morning drive into the city I called the radiology department to let them know that I was coming and that an IV nurse would have to be paged when I arrived in order to gain IV access through the port; why I did this, even though I knew it would not have the speedy result the oncology department thought it would; because, I was told to, and I figured that it was worth a shot. Point one, me, oncology, zero. As I checked in at the radiology desk I told her my name and showed her my key chain ID tag saying that I had a super port that could be used for scans and needed an IV nurse, she was less than enthusiastic that I just added an extra step to my check in process. So John and I sat in the empty waiting room; him with his delicious, ice cold, refreshing, dunkins iced coffee, and me with my two large bottles of internal liquid highlighters that make you gag, each in a different flavor nonetheless. I know what you're thinking, Colleen, they come in flavors, how bad can they be.... well, they are disgusting. I will give the creator of the berry flavored barium sulfate (the real name for the drinkable highlighter) some credit, it does provoke less of a gag reflex than the "original", which is why I traded in the bottle of original for a second bottle of the berry. So we drank, we waited, we finished drinking, we waited, finally an IV nurse came up to radiology to access the port and after a long conversation about the port and showing her too my handy, dandy ID key chain she admited that she's never seen a port placed where I have it, thanks for the confidence lady! Seeing that the port is so new and I still have the stitches at this point, it's pretty sore, but finally the IV is in, and we're in business. The scan goes normally until they administered the IV scan contrast. Holy Cow! A flood of the crazy warm sensation bursts through my body at record levels. When the scan is over and the tech reentered the room I asked if they used more contrast or pushed it through at a faster pace because I now have a port, she said that the amount and rate they used was standard, but previously, because my veins are so small they might have reduced the force in which it was administered in the past. Good to know. Now that the scan is over, and we have been at BI for just about three hours we have to wait for an IV nurse to come back to radiology in order to remove the IV, a half hour later, we are Finally on our way out of Boston!
Today is Thursday, Result day! This morning we woke up a bit earlier than normal to make our way back into Boston to meet with my oncologist, get blood work and to have the stitches removed (finally!). Drum Roll Please.... Good News!! The tumors that were present in my liver are barely visible, Dr. H said he had to look very closely to see a shadow of what was left of the liver tumors. I asked about the tumors in my spleen and pleura and he happily said that they are stable; I know I should be happy with anything that isn't bigger, but I'd like it if we could have an over all disappearing act.
Although I do have some pretty serious side effects from the Taxol (exhaustion, body pain to the point of not being able to walk, and finger numbness that is increasingly getting worse with each treatment), I will be doing two more treatments of a reduced amount and then getting another CT Scan. From there we will decide whether to take a break from treatments for a while and let my body recoup, or continue with a reduced treatment.
I give myself credit for asking intelligent, important questions. Today I asked a question that I already knew the answer to, but still hope on a daily basis that it is not the case. I asked, if we stop treating for a little while after my next two rounds, will the cancer grow back in full force as it had done last year, or is it still a possibility that it will just disappear and not return? Dr. H, kindly as can be, reminded me that at this point our goal is to keep the cancer under control and give me the best quality of life for as long as possible. Crap! So the rest of my life really is going to revolve around doctor appointments and looking forward to the "good days" of each month. Why did I ask?... we just got such good news.
The blood work showed that my platelets are at a normal level, but my white count is low, so I should be careful of infection, and as always, if I have a fever I should call and come back. Just one more thing... Bring in the surgical nurse! The stitches are removed, although I do have a small opening that hasn't healed yet. With caution and a few days, that should scab over and all will be well!
CHEERS! to the fact that the treatments are still working, enjoy these last few weeks of summer!
Upcoming Appts:
Chemo: Friday, September 3
During our early morning drive into the city I called the radiology department to let them know that I was coming and that an IV nurse would have to be paged when I arrived in order to gain IV access through the port; why I did this, even though I knew it would not have the speedy result the oncology department thought it would; because, I was told to, and I figured that it was worth a shot. Point one, me, oncology, zero. As I checked in at the radiology desk I told her my name and showed her my key chain ID tag saying that I had a super port that could be used for scans and needed an IV nurse, she was less than enthusiastic that I just added an extra step to my check in process. So John and I sat in the empty waiting room; him with his delicious, ice cold, refreshing, dunkins iced coffee, and me with my two large bottles of internal liquid highlighters that make you gag, each in a different flavor nonetheless. I know what you're thinking, Colleen, they come in flavors, how bad can they be.... well, they are disgusting. I will give the creator of the berry flavored barium sulfate (the real name for the drinkable highlighter) some credit, it does provoke less of a gag reflex than the "original", which is why I traded in the bottle of original for a second bottle of the berry. So we drank, we waited, we finished drinking, we waited, finally an IV nurse came up to radiology to access the port and after a long conversation about the port and showing her too my handy, dandy ID key chain she admited that she's never seen a port placed where I have it, thanks for the confidence lady! Seeing that the port is so new and I still have the stitches at this point, it's pretty sore, but finally the IV is in, and we're in business. The scan goes normally until they administered the IV scan contrast. Holy Cow! A flood of the crazy warm sensation bursts through my body at record levels. When the scan is over and the tech reentered the room I asked if they used more contrast or pushed it through at a faster pace because I now have a port, she said that the amount and rate they used was standard, but previously, because my veins are so small they might have reduced the force in which it was administered in the past. Good to know. Now that the scan is over, and we have been at BI for just about three hours we have to wait for an IV nurse to come back to radiology in order to remove the IV, a half hour later, we are Finally on our way out of Boston!
Today is Thursday, Result day! This morning we woke up a bit earlier than normal to make our way back into Boston to meet with my oncologist, get blood work and to have the stitches removed (finally!). Drum Roll Please.... Good News!! The tumors that were present in my liver are barely visible, Dr. H said he had to look very closely to see a shadow of what was left of the liver tumors. I asked about the tumors in my spleen and pleura and he happily said that they are stable; I know I should be happy with anything that isn't bigger, but I'd like it if we could have an over all disappearing act.
Although I do have some pretty serious side effects from the Taxol (exhaustion, body pain to the point of not being able to walk, and finger numbness that is increasingly getting worse with each treatment), I will be doing two more treatments of a reduced amount and then getting another CT Scan. From there we will decide whether to take a break from treatments for a while and let my body recoup, or continue with a reduced treatment.
I give myself credit for asking intelligent, important questions. Today I asked a question that I already knew the answer to, but still hope on a daily basis that it is not the case. I asked, if we stop treating for a little while after my next two rounds, will the cancer grow back in full force as it had done last year, or is it still a possibility that it will just disappear and not return? Dr. H, kindly as can be, reminded me that at this point our goal is to keep the cancer under control and give me the best quality of life for as long as possible. Crap! So the rest of my life really is going to revolve around doctor appointments and looking forward to the "good days" of each month. Why did I ask?... we just got such good news.
The blood work showed that my platelets are at a normal level, but my white count is low, so I should be careful of infection, and as always, if I have a fever I should call and come back. Just one more thing... Bring in the surgical nurse! The stitches are removed, although I do have a small opening that hasn't healed yet. With caution and a few days, that should scab over and all will be well!
CHEERS! to the fact that the treatments are still working, enjoy these last few weeks of summer!
Upcoming Appts:
Chemo: Friday, September 3
Saturday, August 7, 2010
First Chemo with the Femoral Port
It's around 11:30pm and the strong meds that BI gave me are starting to wear off, so forgive me if this gets sloppy.
Well, lets start with the good stuff... Uncle John, Aunt Alma, Aunt Patsy, and Aunt Diane and Uncle Tony Carideo put us up in the Park Plaza hotel. After checking in there we made our way to Flemings Steak House where we had a reservation and gift cards from Auntie Sandi and Big Bill; everything was absolutely phenomenal! If you do get to make your way there, our waiter Tim was Fantastic! I would also like to thank the anonymous person who called in and made a generous donation to our bill, it completely confused us! haha
Alright, again with real life... I suppose I have to start by telling you that the day after surgery, on Tuesday, I began getting a weird heart issue that at times included shortness of breath. I was in contact with my doctors and we agreed that it was safe to wait until today to be physically checked out (if you know me well enough you know this was mostly my decision). Okay, back to today... we went in and discussed the heart thing, an EKG was done, and all came out clear! The port site is still sore from Monday's surgery, the bandage was taken off, blood cleaned up and the needle was put in... what an odd feeling!! My nurse is so amazing she brought us a sample port and explained to us how the entire thing works - wow! what a process! There was an incision made to the left of my right hip, where the actual port was placed; however there was also an incision made in the crease where my leg meets my lower abdomen (this is where the unexpected bleeding came post surgery on Monday). Today as the last chemo was being administered, I noticed blood coming from the port site, so my nurse came in and checked it out. Two of the nurses cleaned it and used new steri-strips to hold the the unhealed part, between the stitches together, and once again all is well! My instructions are to stop "doing stuff that will pull the stitches", and to call if the heart palpitations get worse, I get a fever, etc., etc. Anyways, the interesting part of all of this is that the port, that is places near my hip has tubing that connects to the femoral vein in my leg and then runs all the way up my body, through my circulatory system into my heart! John Michael took some pictures of the port that you will find below.
Upcoming Appointments:
Torso CT Scan: Sunday 8/15/10
Scan Results & Pulling Stitches: Thursday, 8/19/10
Chemo if the plan remains the same: (I pushed it back one week) Friday, 9/3/10
Well, lets start with the good stuff... Uncle John, Aunt Alma, Aunt Patsy, and Aunt Diane and Uncle Tony Carideo put us up in the Park Plaza hotel. After checking in there we made our way to Flemings Steak House where we had a reservation and gift cards from Auntie Sandi and Big Bill; everything was absolutely phenomenal! If you do get to make your way there, our waiter Tim was Fantastic! I would also like to thank the anonymous person who called in and made a generous donation to our bill, it completely confused us! haha
Alright, again with real life... I suppose I have to start by telling you that the day after surgery, on Tuesday, I began getting a weird heart issue that at times included shortness of breath. I was in contact with my doctors and we agreed that it was safe to wait until today to be physically checked out (if you know me well enough you know this was mostly my decision). Okay, back to today... we went in and discussed the heart thing, an EKG was done, and all came out clear! The port site is still sore from Monday's surgery, the bandage was taken off, blood cleaned up and the needle was put in... what an odd feeling!! My nurse is so amazing she brought us a sample port and explained to us how the entire thing works - wow! what a process! There was an incision made to the left of my right hip, where the actual port was placed; however there was also an incision made in the crease where my leg meets my lower abdomen (this is where the unexpected bleeding came post surgery on Monday). Today as the last chemo was being administered, I noticed blood coming from the port site, so my nurse came in and checked it out. Two of the nurses cleaned it and used new steri-strips to hold the the unhealed part, between the stitches together, and once again all is well! My instructions are to stop "doing stuff that will pull the stitches", and to call if the heart palpitations get worse, I get a fever, etc., etc. Anyways, the interesting part of all of this is that the port, that is places near my hip has tubing that connects to the femoral vein in my leg and then runs all the way up my body, through my circulatory system into my heart! John Michael took some pictures of the port that you will find below.
Upcoming Appointments:
Torso CT Scan: Sunday 8/15/10
Scan Results & Pulling Stitches: Thursday, 8/19/10
Chemo if the plan remains the same: (I pushed it back one week) Friday, 9/3/10
Monday, August 2, 2010
Femoral Line Surgery Day
I'm lucky enough this week to start off with surgery on Monday and end with chemo on Friday, oh yes, lucky me!
Today was surgery day, and over all things went well. We got there a half hour early, but still had to wait until 9am to be called in for the surgery prep. There was a little trouble finding a vein for the initial IV, to put the anesthesia through; but with the use of ultra sound machines (on the third try) a good line was placed. After being brought into the OR room, and sliding onto the table, I was out like a light.
A few hours later I woke up in recovery and was told that the surgery went well. The recovery nurse was doing her post-op assessment when her facial expression completely changed and she called for my doctor to be paged, and for the doctor in the room to assist until then. The worry on every ones faces was from bleeding from the incision site; I wouldn't find out later that there was quite a bit of blood. The assisting doctor held pressure until my surgeon arrived, and although the pressure being held to the area would have fixed the issue, my surgeon added a couple more stitches just to be sure, put a dressing on it, and all was well. I was held in recover for a bit longer than normal, but once I was cleared we were on our way home.
I was sore, exhausted and in a bunch of pain... much of that has subsided now, and I'm doing my best to follow the discharge directions of, in summary, "do nothing", which are pretty much my instructions for the next two weeks until the site heals; which I've got to tell you isn't my forte. In two weeks time I will have to go into the office to have the stitches pulled. It is a great relief to know that I will not have to be stuck several times whenever I go in for treatment of a scan! We'll see how this fancy little access line works on Friday, until then, Thank you all for the well wishes.
Upcoming Appointments:
Chemo: Friday, August 6th
CT Torso Scan: Sunday, August 15th
Scan Results/Stitches being pulled: Thursday, August 19th
Chemo: Friday, September 3rd
Today was surgery day, and over all things went well. We got there a half hour early, but still had to wait until 9am to be called in for the surgery prep. There was a little trouble finding a vein for the initial IV, to put the anesthesia through; but with the use of ultra sound machines (on the third try) a good line was placed. After being brought into the OR room, and sliding onto the table, I was out like a light.
A few hours later I woke up in recovery and was told that the surgery went well. The recovery nurse was doing her post-op assessment when her facial expression completely changed and she called for my doctor to be paged, and for the doctor in the room to assist until then. The worry on every ones faces was from bleeding from the incision site; I wouldn't find out later that there was quite a bit of blood. The assisting doctor held pressure until my surgeon arrived, and although the pressure being held to the area would have fixed the issue, my surgeon added a couple more stitches just to be sure, put a dressing on it, and all was well. I was held in recover for a bit longer than normal, but once I was cleared we were on our way home.
I was sore, exhausted and in a bunch of pain... much of that has subsided now, and I'm doing my best to follow the discharge directions of, in summary, "do nothing", which are pretty much my instructions for the next two weeks until the site heals; which I've got to tell you isn't my forte. In two weeks time I will have to go into the office to have the stitches pulled. It is a great relief to know that I will not have to be stuck several times whenever I go in for treatment of a scan! We'll see how this fancy little access line works on Friday, until then, Thank you all for the well wishes.
Upcoming Appointments:
Chemo: Friday, August 6th
CT Torso Scan: Sunday, August 15th
Scan Results/Stitches being pulled: Thursday, August 19th
Chemo: Friday, September 3rd
Tuesday, July 27, 2010
Port Surgery Prep
I hope you all like the new design, it's a bit more cheerful!
Yesterday afternoon was a very busy one. John and I parked on West campus of B.I., walked over to East campus to pick up copies of my scans, walked them over to Dana Farber, then walked back to West campus to meet with Dr. Critchlow; phew, we made it just in time!
It was a quick appointment. We've been speaking of the pros and cons of ports, how they work, and what it consists of for over a year now; so needless to say we were already informed of the details. Yesterday's appointment was to go over exactly where the port would be placed. A femoral central line will be put in, which means that unlike normal ports mine will be connected to a vein in my pelvis instead of in my chest. It isn't that this type isn't heard of, it's just not the number one choice when it comes to placing a port; however, in my case, it is our best option. A port is a round disk, the size of a quarter, that is placed under the skin and has a tube that connects to a major blood vessel in the body. This will allow venous access without putting in an IV. The "super port" that will be placed can be used for everything: blood draws, Scan dye, and chemo. I know what you're thinking, why didn't you do this over a year ago... well, I am a high risk for both infection and blood clots developing from this surgery; but no worries, I'm convinced that by sticking it out (dorky pun, I know, I just couldn't resist...) all of this time with the IVs, that everything will go as smoothly as can be.
Upcoming Appointments:
Monday, August 2nd: Port Day Surgery
Friday, August 6th: Chemo
Yesterday afternoon was a very busy one. John and I parked on West campus of B.I., walked over to East campus to pick up copies of my scans, walked them over to Dana Farber, then walked back to West campus to meet with Dr. Critchlow; phew, we made it just in time!
It was a quick appointment. We've been speaking of the pros and cons of ports, how they work, and what it consists of for over a year now; so needless to say we were already informed of the details. Yesterday's appointment was to go over exactly where the port would be placed. A femoral central line will be put in, which means that unlike normal ports mine will be connected to a vein in my pelvis instead of in my chest. It isn't that this type isn't heard of, it's just not the number one choice when it comes to placing a port; however, in my case, it is our best option. A port is a round disk, the size of a quarter, that is placed under the skin and has a tube that connects to a major blood vessel in the body. This will allow venous access without putting in an IV. The "super port" that will be placed can be used for everything: blood draws, Scan dye, and chemo. I know what you're thinking, why didn't you do this over a year ago... well, I am a high risk for both infection and blood clots developing from this surgery; but no worries, I'm convinced that by sticking it out (dorky pun, I know, I just couldn't resist...) all of this time with the IVs, that everything will go as smoothly as can be.
Upcoming Appointments:
Monday, August 2nd: Port Day Surgery
Friday, August 6th: Chemo
Wednesday, July 21, 2010
A Faux Healthy Week
This is definately not a good faux, as in faux fur or crocodile accessories; this is annoyingly still being exhausted and sick after I've passed the one week mark after chemo. I suppose defining the word "sick" is necessary in this case. I am not sick because of the chemo; but I'm still trying to fight off the nasty sinus, and congestion thing I've had since before chemo, and although it seems to be getting better, the results of my blood work caused my doctors to put me on antibiotics anyways. I am on a Z-Pack for five days, beginning today.
The Dana Farber consult was uneventful. I failed to get the doctor copies of my scans so she hasn't been able to compare them or make her own accessment, I'm bringing them over to her on Monday. Dr. Gandhi did however have the results of the biopsy that DF had done concerning the genetic possibility of my thymic carcinoma; it was negative. The reason for the biospy was because there is a treatment out there that has shown positive results in people who have been positive for this crossing of genes; the good news is that it is now showing positive results in people who do not have this proven trait as well, meaning, it does still remain a possible treatment if the chemo I'm on stops working.
Thank you so much for everybody who became followers and made a comment on not only the last, but any of the postings! They really lift my spirits, not to mention that it's an odd concept writing and not knowing who is reading it, so keep the comments coming!
Upcoming Appts:
Monday, July 26: Dr. Critchlow appointment
Monday, August 2: Port Day Surgery
Friday, August 6: Chemo
The Dana Farber consult was uneventful. I failed to get the doctor copies of my scans so she hasn't been able to compare them or make her own accessment, I'm bringing them over to her on Monday. Dr. Gandhi did however have the results of the biopsy that DF had done concerning the genetic possibility of my thymic carcinoma; it was negative. The reason for the biospy was because there is a treatment out there that has shown positive results in people who have been positive for this crossing of genes; the good news is that it is now showing positive results in people who do not have this proven trait as well, meaning, it does still remain a possible treatment if the chemo I'm on stops working.
Thank you so much for everybody who became followers and made a comment on not only the last, but any of the postings! They really lift my spirits, not to mention that it's an odd concept writing and not knowing who is reading it, so keep the comments coming!
Upcoming Appts:
Monday, July 26: Dr. Critchlow appointment
Monday, August 2: Port Day Surgery
Friday, August 6: Chemo
Friday, July 9, 2010
Chemo Treatment Three
So I figured I'd write the blog while I still had the BI, strongest meds in me, and before the misery sets in.
Chemo treatment three was prefaced with a CT Scan that was done last Saturday (details in last blog); because we were unable to use IV contrast, the only images that the radiologists and doctors were able to make out were in the lung area. Good News! The tumors in the lung area have decreased in size, and although they could make out the spleen tumor and it looks the same size, they have to assume that if some of the tumors shrunk using this combination, then that would be true of the other tumors... so carbo/taxol - here we come again!
First lets start with a big Thank You to Uncle John Nyhan, who has taken on the project of setting us up with amazing date night/getaways near B.I. the night before chemo. This treatment Auntie Sheila, Uncle Chuck and Uncle John put us up in a Radisson Boston suite. The suite was on the 24th floor and had an amazing view of the city. From there we took a taxi down to the pier where they had given us tickets to take a sunset cruise around Boston Harbor, it was fantastic - and we had perfect weather! After the cruise we strolled our way back to the hotel and had dinner, and then went for a late night swim in the hotel pool. Then came morning.
I can't tell you how wonderful it is to set a 7am alarm on a day that we have to make our way to BI! We even had time to get breakfast, pack and watch some of the Fox Zip Trip. I've had either a cold or allergies for the past few days, so I've been a little nervous about my white count. After checking in, doing vitals, having my blood drawn, we met with Dr. H who then gave us the results of the scan (first paragraph), did a normal pre-chemo physical and we discussed, again, putting in a port. It is getting nearly impossible to find a usable vein in my arms and the ones that are being found are hardened with scar tissue. Dr. H is going to be in touch with Dr. Jonathan Critchlow (my trusty surgeon), who will give his opinion, and with whom we might be meeting with for the procedure just before the next chemo treatment. We again made our way to the waiting room to await the bloodwork results.
Linda, our chemo nurse called us back to the treatment center 20 minutes later and said that we would be going ahead with chemo. Dr. H stopped by to say that my levels were just above the accepted numbers (lowest they can be 1500, mine today 1700), but that I would have to have my blood drawn a week from Monday and if I get a fever, etc. then I need to check back with them. I assumed the levels were low because of the sinus thing I'm fighting; however, the doctors feel that it is the abuse my body is taking from the chemo and that it is only going to get worse as we go on, it is not only my cbc that is low, but also my platelets. Dr. H has decided to start doing chemo every four weeks instead of every three weeks to allow more time for my body to recover. This obviously has pros and cons; although we are leaving more time between treatments for the tumors to fight back, I need to be sure that my body is ready to fight back even harder - so every four weeks it is!
Chemo: two stabs in abnormal places on my arm - we are at the point where they are finding veins one wouldn't even know are there, and hurt like hell. (ps: if anyone out there is gambling on how many stabs it takes each time, I want in on the action!) So after a very long, sore day, we finally headed home to lounge in the pool.
Also, it would mean a lot to me if the people who are reading the blog would become followers, or leave me a comment with your names so that I can honestly appreciate each person who is thinking about us through this craziness. Thank you in advance. ☺
Upcoming Appts:
Monday, July19: bloodwork
Tuesday, July 20: Dana Farber consult
Monday, July 26: Dr. Critchlow appointment
Monday, August 2: Port Day Surgery
Friday, August 6: Chemo
Chemo treatment three was prefaced with a CT Scan that was done last Saturday (details in last blog); because we were unable to use IV contrast, the only images that the radiologists and doctors were able to make out were in the lung area. Good News! The tumors in the lung area have decreased in size, and although they could make out the spleen tumor and it looks the same size, they have to assume that if some of the tumors shrunk using this combination, then that would be true of the other tumors... so carbo/taxol - here we come again!
First lets start with a big Thank You to Uncle John Nyhan, who has taken on the project of setting us up with amazing date night/getaways near B.I. the night before chemo. This treatment Auntie Sheila, Uncle Chuck and Uncle John put us up in a Radisson Boston suite. The suite was on the 24th floor and had an amazing view of the city. From there we took a taxi down to the pier where they had given us tickets to take a sunset cruise around Boston Harbor, it was fantastic - and we had perfect weather! After the cruise we strolled our way back to the hotel and had dinner, and then went for a late night swim in the hotel pool. Then came morning.
I can't tell you how wonderful it is to set a 7am alarm on a day that we have to make our way to BI! We even had time to get breakfast, pack and watch some of the Fox Zip Trip. I've had either a cold or allergies for the past few days, so I've been a little nervous about my white count. After checking in, doing vitals, having my blood drawn, we met with Dr. H who then gave us the results of the scan (first paragraph), did a normal pre-chemo physical and we discussed, again, putting in a port. It is getting nearly impossible to find a usable vein in my arms and the ones that are being found are hardened with scar tissue. Dr. H is going to be in touch with Dr. Jonathan Critchlow (my trusty surgeon), who will give his opinion, and with whom we might be meeting with for the procedure just before the next chemo treatment. We again made our way to the waiting room to await the bloodwork results.
Linda, our chemo nurse called us back to the treatment center 20 minutes later and said that we would be going ahead with chemo. Dr. H stopped by to say that my levels were just above the accepted numbers (lowest they can be 1500, mine today 1700), but that I would have to have my blood drawn a week from Monday and if I get a fever, etc. then I need to check back with them. I assumed the levels were low because of the sinus thing I'm fighting; however, the doctors feel that it is the abuse my body is taking from the chemo and that it is only going to get worse as we go on, it is not only my cbc that is low, but also my platelets. Dr. H has decided to start doing chemo every four weeks instead of every three weeks to allow more time for my body to recover. This obviously has pros and cons; although we are leaving more time between treatments for the tumors to fight back, I need to be sure that my body is ready to fight back even harder - so every four weeks it is!
Chemo: two stabs in abnormal places on my arm - we are at the point where they are finding veins one wouldn't even know are there, and hurt like hell. (ps: if anyone out there is gambling on how many stabs it takes each time, I want in on the action!) So after a very long, sore day, we finally headed home to lounge in the pool.
Also, it would mean a lot to me if the people who are reading the blog would become followers, or leave me a comment with your names so that I can honestly appreciate each person who is thinking about us through this craziness. Thank you in advance. ☺
Upcoming Appts:
Monday, July19: bloodwork
Tuesday, July 20: Dana Farber consult
Monday, July 26: Dr. Critchlow appointment
Monday, August 2: Port Day Surgery
Friday, August 6: Chemo
Sunday, July 4, 2010
CT Scan 7/3/10
Surprise, Surprise!
I was under the assumption that I was going in for a chest scan; however, come to find out this was not the case. The order was for a chest, abdomen and pelvis scan, which you would think wouldn't matter... well it does. Essentially what it means is that I have to drink the disgusting pre-scan drink, and the process is three times as long. While I was choking down the liquid internal highlighters, the tech (who knows me from before) came out to say hi and let me know that they were going to call the IV nurse right away instead of having the Radiology Techs try first - a reason I remain loyal to BI.
When the IV nurse, who has done my IV 3 times before arrived, she was not so successful this time around. She stuck me three times and each time fished around for the vein, then two different techs each tried once. Twice a vein was hit, but there is so much scar tissue that the IV kept popping back out and would flush (flush = pushing fluid through). It ended up that the radiologists decided that they would do the CT Scan without using the IV contrast.
I just hope that the images are clear enough for the radiologists and Dr. Huberman to accurately compare the tumors; although I have prepared myself for an unexpected call this week telling me that we need to re-due the scan before Friday.
I am scheduled to go in Friday to find out the results of the scan; the scan is meant to tell us if the carbo/taxol combo is working and if we should continue with that chemo or we need to seek an alternative treatment.
We Shall See!
Next Appointment: Friday, July 9th
I was under the assumption that I was going in for a chest scan; however, come to find out this was not the case. The order was for a chest, abdomen and pelvis scan, which you would think wouldn't matter... well it does. Essentially what it means is that I have to drink the disgusting pre-scan drink, and the process is three times as long. While I was choking down the liquid internal highlighters, the tech (who knows me from before) came out to say hi and let me know that they were going to call the IV nurse right away instead of having the Radiology Techs try first - a reason I remain loyal to BI.
When the IV nurse, who has done my IV 3 times before arrived, she was not so successful this time around. She stuck me three times and each time fished around for the vein, then two different techs each tried once. Twice a vein was hit, but there is so much scar tissue that the IV kept popping back out and would flush (flush = pushing fluid through). It ended up that the radiologists decided that they would do the CT Scan without using the IV contrast.
I just hope that the images are clear enough for the radiologists and Dr. Huberman to accurately compare the tumors; although I have prepared myself for an unexpected call this week telling me that we need to re-due the scan before Friday.
I am scheduled to go in Friday to find out the results of the scan; the scan is meant to tell us if the carbo/taxol combo is working and if we should continue with that chemo or we need to seek an alternative treatment.
We Shall See!
Next Appointment: Friday, July 9th
Saturday, June 26, 2010
Round 2 Treatment 2
The blog, I know I've been slacking.... It takes a lot of brain power to formulate words and press the little buttons with the letters to magically make them appear on your screen.
This treatment started off like a stay-cation (if the marketing industry has indeed coined this a term). Uncle John (Nyhan) and family pulled a lot of strings and were extremely generous to John Michael and myself the night before chemo. Thursday from work we headed into Boston, and hit zero traffic, to check in at the Holiday Inn, Brookline; where we were upgraded to a suite! The hotel has an indoor pool, jacuzzi, and a chess board where the pieces are the sizes of a three year old, if only I played chess! From there we changed into our Red Sox gear and headed to a fully paid dinner at Remy's Restaurant, if you have not checked this place out - get there! After dinner we headed to our behind home plate seats, to watch Lackey pitch a Red Sox win! Seeing the weather was perfect, and Boston had closed down streets due to the Celtics game also playing that night, we walked back to the hotel and watched the C's (sadly lose). The best part to all of this was sleeping in until 8:00am! By this time we would have already been on the road for an hour and a half. We checked out and took the 10 minute car ride to BI, and there we were faced with reality...
Blood work, Dr. Appointment, 3 stabs for the IV, 6 hours of chemo, and more than 2 hours of traffic on the way home. The day after chemo was surprisingly okay, I'm not sure how this happened but my bodily misery set in slowly; but unfortuantely it did set in. It was the normal awfulness, will I will spare you of repeating; although, I am past the week mark so they symptoms seem to have subsided, for the most part.
Upcoming Appts:
CT Scan: Saturday 7/3/10
Results/Chemo: Friday 7/9/10
This treatment started off like a stay-cation (if the marketing industry has indeed coined this a term). Uncle John (Nyhan) and family pulled a lot of strings and were extremely generous to John Michael and myself the night before chemo. Thursday from work we headed into Boston, and hit zero traffic, to check in at the Holiday Inn, Brookline; where we were upgraded to a suite! The hotel has an indoor pool, jacuzzi, and a chess board where the pieces are the sizes of a three year old, if only I played chess! From there we changed into our Red Sox gear and headed to a fully paid dinner at Remy's Restaurant, if you have not checked this place out - get there! After dinner we headed to our behind home plate seats, to watch Lackey pitch a Red Sox win! Seeing the weather was perfect, and Boston had closed down streets due to the Celtics game also playing that night, we walked back to the hotel and watched the C's (sadly lose). The best part to all of this was sleeping in until 8:00am! By this time we would have already been on the road for an hour and a half. We checked out and took the 10 minute car ride to BI, and there we were faced with reality...
Blood work, Dr. Appointment, 3 stabs for the IV, 6 hours of chemo, and more than 2 hours of traffic on the way home. The day after chemo was surprisingly okay, I'm not sure how this happened but my bodily misery set in slowly; but unfortuantely it did set in. It was the normal awfulness, will I will spare you of repeating; although, I am past the week mark so they symptoms seem to have subsided, for the most part.
Upcoming Appts:
CT Scan: Saturday 7/3/10
Results/Chemo: Friday 7/9/10
Thursday, June 17, 2010
Dana Farber Consult
I think I might have confused some of you as to what the DF meeting consisted of... this was not a second opinion meeting, rather than an informative session on various treatments that another doctor might know of that BI doesn't in case the Carbo/Taxol treatment isn't working.
John and I met with Dr. Gandhi, who is a thoracic oncologist at Dana Farber. She reviewed my BI medical records prior to us getting there, and stated that the treatment that I was given at BI would have been the same treatment that would have been given at DF. She agreed that we should wait for the results of my next CT Scan before considering any kind of alternative treatment.
Dr. Gandhi did mention that DF is running a study on thymic cancers, in that some cases might be connected to an abnormal crossing of genes (its a complicated theory with many big words that I don't remember). She is having my biopsy slide sent over from BI to see if my thymic carcinoma could possibly be from this abnormality. If it is in fact the crossing of these particular genes that could have caused my thymic carcinoma there is a treatment that has been around for 5 years that has shown some positive results in patients; her worry is that there will not be enough of the slide to get a conclusive result. I mentioned that I would be willing to do another biopsy at DF if the carbo/taxol treatment wasn't working and we did need to seek an alternative treatment.
We spoke about the pros/cons of Phase I trials, Phase II trials and the difficulty of finding one that relates to my type of cancer, the possibilty and burden of travelling to be involved with a clinical trial, and in general the time and dedication that clincal trials take from a person.
There were a lot of "IFs" because of course we are hoping that the carbo/taxol is indeed working. We will sit down again with Dr. Gandhi at DF again once the CT Scan has been done and we have the results.
I have to say that as a facility, I like BI better and I hope not to have to change; but with my current oncologists and the results of future tests we will cross that bridge when we come to it.
6/18: Chemo treatment #2
John and I met with Dr. Gandhi, who is a thoracic oncologist at Dana Farber. She reviewed my BI medical records prior to us getting there, and stated that the treatment that I was given at BI would have been the same treatment that would have been given at DF. She agreed that we should wait for the results of my next CT Scan before considering any kind of alternative treatment.
Dr. Gandhi did mention that DF is running a study on thymic cancers, in that some cases might be connected to an abnormal crossing of genes (its a complicated theory with many big words that I don't remember). She is having my biopsy slide sent over from BI to see if my thymic carcinoma could possibly be from this abnormality. If it is in fact the crossing of these particular genes that could have caused my thymic carcinoma there is a treatment that has been around for 5 years that has shown some positive results in patients; her worry is that there will not be enough of the slide to get a conclusive result. I mentioned that I would be willing to do another biopsy at DF if the carbo/taxol treatment wasn't working and we did need to seek an alternative treatment.
We spoke about the pros/cons of Phase I trials, Phase II trials and the difficulty of finding one that relates to my type of cancer, the possibilty and burden of travelling to be involved with a clinical trial, and in general the time and dedication that clincal trials take from a person.
There were a lot of "IFs" because of course we are hoping that the carbo/taxol is indeed working. We will sit down again with Dr. Gandhi at DF again once the CT Scan has been done and we have the results.
I have to say that as a facility, I like BI better and I hope not to have to change; but with my current oncologists and the results of future tests we will cross that bridge when we come to it.
6/18: Chemo treatment #2
Thursday, June 10, 2010
Hair we go again...
So yes, as the dorky play on words above suggests, I am losing my hair... again. As anticipated two weeks after my first treatment it has begun to fall out. This is the messy part, when everything gets itchy and hair is Everywhere! My thinking is that I'm going to mix it up with with different color wigs this time, it's not as if it's a secret that it is infact a wig. Last summer I opted not to wear the wig often, it was sweaty, itchy and slid backwards. This time around I am looking at a partial wig that doesn't cover the top of your head but allows hair to hang down, so I could wear a hat or scarf, as I did last time, but this time it would appear as though I had hair as well. I figure, why not, it's covered by insurance anyway.
Good News!
I apologize, I forgot to report this earlier. The CBC blood work came back good; there is no need for the white cell boosting shot, at least not at this point.
Other good news, I feel great! Thursday, June 3rd was one week after chemo was administered; I started out the day as miserable as the days previously in the week, but by late afternoon I was back to normal. It was like a switch where by body had finally reached the trampoline and bounced back! At least now I have a time frame for feeling miserable.. so to avoid my grumpiness, hold off on all contact for 7 days after chemo. ☺
On the research front: John and I are going to be sitting down with a Doctor at Dana-Farber on Tuesday the 15th of June. Dr. Leena Gandhi is involved with thoracic clinical trials, our meeting is just in info-session. After two cycles of the carbo/taxol treatment I will be re-scanned, if the result of that scan is that this chemo isn't working it'll be nice just to have a fresh opinion on the matter.
John and I have been very busy lately. After many, many discussions and number pulling, we came to the very hard decision that we are going to have to put our house up for sale. We have been working these last few weeks to declutter, organize and prepare for listing our house. Part of this process will be to have our first ever Yard Sale this weekend (6/12/10), wish us luck! We were fortunate enough the last couple times I was sick to scrape by and keep the house; this time we feel that it is in our best interest to sell. This will give us the opportunity to yes use that money elsewhere each month, but also to possibly move to a condo where outdoor maintanence won't be an issue, and there will fewer rooms and square footage to care for. This is a sad step, and will be a long process I'm sure; but will hopefully in the end just be a sidestep until we can someday move into the house of our dreams.
On another note, I have to say how blessed we are by the amazing family and friends we have. I haven't asked for permission to mention any names, so I won't; but you know who you are and Thank You! Within the past month... John and I received fantastic tickets to the red sox game, and were able to eat at Jerry Remy's new restaurant because of a gift card we had received, and were even given money for parking - it was a much needed, fun night out that we otherwise never would have been able to pull off! Our groceries last week were covered by a Hannaford gift card that we anonymously received. This is in addition to the care package that was dropped off at our house, upcoming plans for a lucky strike bowling night that was donated to us, the several prayer cards, and checks we have received. I have to tell you how fortunate we feel that in this time of need the people we are already lucky enough to have in our lives pull together to help us, not only get by on an everyday basis, but to also make sure that we take advantage of the "quality of life" aspect that you often hear about when it comes to cancer patients.
Upcoming Appts:
Tuesday, June 15th: Dr. G @ Dana-Farber
Friday, June 18th: Dr. H then Chemo @ BI
Good News!
I apologize, I forgot to report this earlier. The CBC blood work came back good; there is no need for the white cell boosting shot, at least not at this point.
Other good news, I feel great! Thursday, June 3rd was one week after chemo was administered; I started out the day as miserable as the days previously in the week, but by late afternoon I was back to normal. It was like a switch where by body had finally reached the trampoline and bounced back! At least now I have a time frame for feeling miserable.. so to avoid my grumpiness, hold off on all contact for 7 days after chemo. ☺
On the research front: John and I are going to be sitting down with a Doctor at Dana-Farber on Tuesday the 15th of June. Dr. Leena Gandhi is involved with thoracic clinical trials, our meeting is just in info-session. After two cycles of the carbo/taxol treatment I will be re-scanned, if the result of that scan is that this chemo isn't working it'll be nice just to have a fresh opinion on the matter.
John and I have been very busy lately. After many, many discussions and number pulling, we came to the very hard decision that we are going to have to put our house up for sale. We have been working these last few weeks to declutter, organize and prepare for listing our house. Part of this process will be to have our first ever Yard Sale this weekend (6/12/10), wish us luck! We were fortunate enough the last couple times I was sick to scrape by and keep the house; this time we feel that it is in our best interest to sell. This will give us the opportunity to yes use that money elsewhere each month, but also to possibly move to a condo where outdoor maintanence won't be an issue, and there will fewer rooms and square footage to care for. This is a sad step, and will be a long process I'm sure; but will hopefully in the end just be a sidestep until we can someday move into the house of our dreams.
On another note, I have to say how blessed we are by the amazing family and friends we have. I haven't asked for permission to mention any names, so I won't; but you know who you are and Thank You! Within the past month... John and I received fantastic tickets to the red sox game, and were able to eat at Jerry Remy's new restaurant because of a gift card we had received, and were even given money for parking - it was a much needed, fun night out that we otherwise never would have been able to pull off! Our groceries last week were covered by a Hannaford gift card that we anonymously received. This is in addition to the care package that was dropped off at our house, upcoming plans for a lucky strike bowling night that was donated to us, the several prayer cards, and checks we have received. I have to tell you how fortunate we feel that in this time of need the people we are already lucky enough to have in our lives pull together to help us, not only get by on an everyday basis, but to also make sure that we take advantage of the "quality of life" aspect that you often hear about when it comes to cancer patients.
Upcoming Appts:
Tuesday, June 15th: Dr. G @ Dana-Farber
Friday, June 18th: Dr. H then Chemo @ BI
Wednesday, June 2, 2010
Effects of Round 2 Chemo
UGH! How did I forget how awful this is?!
It is just about one week after my first, second round of chemo and I'm still miserable. I forgot just how miserable I felt after being a sick grouch for a straight week.
To compare Taxol to VP16 is fairly easy I suppose. VP=puking, Taxol = pain. Unpleasant either way. As with Round 1, the night (very early morning) after my chemo treatment I woke up feeling very nauseous, this was a continuous feeling for about three days, then subsided to waves of nausea, just to keep it interesting. Tired, foggy-brained, and blah are all "same story" symptoms, as I'll call them.
Pain... pain is not a symptom that I was expecting. When someone tells you that you might ache from the medicine, I'm thinking, okay maybe a sore muscle here or there - - NO! Pain, Taxol gives pain (just for clarification). Saturday I began getting very sore, but Sunday, I could hardly walk on my feet. Even to take a few steps was extremely painful, not to mention the numbness and tingling that occurs every so often. This pain, which for me has been mostly in my hips, legs with occasional back pain is still ongoing, I rely on advil or aleve to take the edge off (which only sometimes helps). As with the last time, at the 5/6 day mark, my throat and neck glands swell and are very tender, which includes my shoulders and the back of my neck.
To sum up.... I'm a mess. A miserable mess, that will hopefully come out of this post-chemo rut soon!
Tomorrow I will go for blood work; the result of my cbc will determine if I will have to receive the neulasta shot the day after my next chemo treatment.
It is just about one week after my first, second round of chemo and I'm still miserable. I forgot just how miserable I felt after being a sick grouch for a straight week.
To compare Taxol to VP16 is fairly easy I suppose. VP=puking, Taxol = pain. Unpleasant either way. As with Round 1, the night (very early morning) after my chemo treatment I woke up feeling very nauseous, this was a continuous feeling for about three days, then subsided to waves of nausea, just to keep it interesting. Tired, foggy-brained, and blah are all "same story" symptoms, as I'll call them.
Pain... pain is not a symptom that I was expecting. When someone tells you that you might ache from the medicine, I'm thinking, okay maybe a sore muscle here or there - - NO! Pain, Taxol gives pain (just for clarification). Saturday I began getting very sore, but Sunday, I could hardly walk on my feet. Even to take a few steps was extremely painful, not to mention the numbness and tingling that occurs every so often. This pain, which for me has been mostly in my hips, legs with occasional back pain is still ongoing, I rely on advil or aleve to take the edge off (which only sometimes helps). As with the last time, at the 5/6 day mark, my throat and neck glands swell and are very tender, which includes my shoulders and the back of my neck.
To sum up.... I'm a mess. A miserable mess, that will hopefully come out of this post-chemo rut soon!
Tomorrow I will go for blood work; the result of my cbc will determine if I will have to receive the neulasta shot the day after my next chemo treatment.
Friday, May 28, 2010
Chemo Treatment Round 2, Session 1
I hate to bore you all with the same info. time and again, so I'll make this short.
When we arrived I was called up for a surprise blood draw, the downside of this is that they use up a vain that the oncology nurse could use... but it all worked out. If we waited for the oncology nurse to place the IV and draw the blood from that we would have had to waited around an extra hour and a half -- no thanks! It all worked out well anyways, my levels came back normal, we saw Dr. H, then began trying to find an IV vein. Second stab and we were in, I'll take it.
In addition to the Carbo I would be taking Taxol, which for some people causes an allergic reaction. To prevent this we started with a very high Benadryl drip, then a few other anti-nausea meds. Finally we began the 3 hour Taxol drip, no reactions that we saw (amazing!), following with the 40 minute Carbo drip. It all went smoothly; although I napped most of the time.
Leaving our house at 6:30am and not arriving home until 6pm, along with the chemo treatment in between definately took its toll. So, yes, I am writing this the following morning, as I sip my ginger tea (ginger supposedly helps with nausea). It was early to bed last night, although I was up a lot of the night feeling sick and very achy, both normal consequents of the treatment.
The doctors decided to hold off on giving me the Neulasta (white cell booster); I am going for blood work on Thursday to check my levels, and this will determine if I will begin receiving the shot the day after chemo.
Treatment session 2 is scheduled for Friday, June 18th.
We will re-scan following this second treatment, date/time TBD.
When we arrived I was called up for a surprise blood draw, the downside of this is that they use up a vain that the oncology nurse could use... but it all worked out. If we waited for the oncology nurse to place the IV and draw the blood from that we would have had to waited around an extra hour and a half -- no thanks! It all worked out well anyways, my levels came back normal, we saw Dr. H, then began trying to find an IV vein. Second stab and we were in, I'll take it.
In addition to the Carbo I would be taking Taxol, which for some people causes an allergic reaction. To prevent this we started with a very high Benadryl drip, then a few other anti-nausea meds. Finally we began the 3 hour Taxol drip, no reactions that we saw (amazing!), following with the 40 minute Carbo drip. It all went smoothly; although I napped most of the time.
Leaving our house at 6:30am and not arriving home until 6pm, along with the chemo treatment in between definately took its toll. So, yes, I am writing this the following morning, as I sip my ginger tea (ginger supposedly helps with nausea). It was early to bed last night, although I was up a lot of the night feeling sick and very achy, both normal consequents of the treatment.
The doctors decided to hold off on giving me the Neulasta (white cell booster); I am going for blood work on Thursday to check my levels, and this will determine if I will begin receiving the shot the day after chemo.
Treatment session 2 is scheduled for Friday, June 18th.
We will re-scan following this second treatment, date/time TBD.
Thursday, May 20, 2010
Miracle Where Art Thou?
Well, I'm still waiting for my miracle; have I not proved myself through this fight thus far? Alright, Round 2 it is. ding. ding. ding.
Biopsy results confirm that the lesions that are in my liver are in fact thymic carcinoma. Dr. Huberman, upon request, showed us the CT Scan results from a few weeks ago. I was surprised to see so many tumors. Not only do I have a 2cm tumor in my pleura, there are also additional tumors on the lung itself. The tumors on my liver are fairly decent in size as well and are spread in various areas, including deep within the liver. There is also a tumor on the lower part of my spleen. Well, I guess we sure pissed this cancer off the first time we tried to destroy it.
The plan... I will begin chemotherapy next week, Thurs. 5/27/10, every treatment after that will be on a Friday. This regiment of chemo will consist of one day of treatment every three weeks and a white cell boosting shot 24 hours after each chemo session. My amazing nurse Linda is willing to teach John how to administer the shot at home, but she needs to finagle with insurance to be sure they will cover an at home shot. If insurance is unwilling to cover the at home shot, then we will drive into Boston the following day to receive the shot.
Chemo. I will be receiving Carboplatin (as I did last time) and Taxol (a new one for me).
Side Effects Summary: Hair loss (in approximately 2 weeks after the first treatment), Nausea (shouldn't be as bad as before), Fatigue (is expected to be worse than last time) and Possible numbness and tingling in lower legs and arms.
Veins. Finding a vein for chemo is always a difficult process. We went over the option of inserting a port, and for now we'll continue to utilize any vein we can find manually. A port is normally surgically inserted under the skin into your subclavean vein (under your collerbone), is run down and ends up connecting to your lower heart. My history of infection deters us from the idea, along with the fact that I have already had a blood clot in each of my subclaveans, but the major reason is that the graft that had to be put in during my last surgery offers alternative complications. It is an option, but we will continue to put it off as long as possible. If a port is put in, I will have to be put on anticoagulants to prevent another blood clot.
As we actively fight this battle with the above mentioned chemotherapy, we are also researching and contacting various thoracic oncologist across the country to see what else might be available for treatment in the long run.
Thank you to everyone who has put us in contact with their connections and given us alternative places to search for a possible cure.
Biopsy results confirm that the lesions that are in my liver are in fact thymic carcinoma. Dr. Huberman, upon request, showed us the CT Scan results from a few weeks ago. I was surprised to see so many tumors. Not only do I have a 2cm tumor in my pleura, there are also additional tumors on the lung itself. The tumors on my liver are fairly decent in size as well and are spread in various areas, including deep within the liver. There is also a tumor on the lower part of my spleen. Well, I guess we sure pissed this cancer off the first time we tried to destroy it.
The plan... I will begin chemotherapy next week, Thurs. 5/27/10, every treatment after that will be on a Friday. This regiment of chemo will consist of one day of treatment every three weeks and a white cell boosting shot 24 hours after each chemo session. My amazing nurse Linda is willing to teach John how to administer the shot at home, but she needs to finagle with insurance to be sure they will cover an at home shot. If insurance is unwilling to cover the at home shot, then we will drive into Boston the following day to receive the shot.
Chemo. I will be receiving Carboplatin (as I did last time) and Taxol (a new one for me).
Side Effects Summary: Hair loss (in approximately 2 weeks after the first treatment), Nausea (shouldn't be as bad as before), Fatigue (is expected to be worse than last time) and Possible numbness and tingling in lower legs and arms.
Veins. Finding a vein for chemo is always a difficult process. We went over the option of inserting a port, and for now we'll continue to utilize any vein we can find manually. A port is normally surgically inserted under the skin into your subclavean vein (under your collerbone), is run down and ends up connecting to your lower heart. My history of infection deters us from the idea, along with the fact that I have already had a blood clot in each of my subclaveans, but the major reason is that the graft that had to be put in during my last surgery offers alternative complications. It is an option, but we will continue to put it off as long as possible. If a port is put in, I will have to be put on anticoagulants to prevent another blood clot.
As we actively fight this battle with the above mentioned chemotherapy, we are also researching and contacting various thoracic oncologist across the country to see what else might be available for treatment in the long run.
Thank you to everyone who has put us in contact with their connections and given us alternative places to search for a possible cure.
Wednesday, May 12, 2010
Liver biopsy 5/12/10
We got to B.I. twenty minutes early this morning (9:10am), the IV was put in with one stick... I was convinced it was going to be a good day, I was mistaken. We had to wait until 11am to take me up to Ultra Sound, where they would use sonography to find the liver tumor to biopsy. After getting up there, all gooped up and receiving a few bruised ribs, I'm sure, the doctors were not able to pin point the tumors well enough to biopsy. Back down to the Day Care Unit I go.
By the time I arrived back in the day care unit it was around noon. The radiologists felt that they would be able to get precise images in order to biopsy if they used the CT Scan, so we waited until about 1:30pm for an opening in CT.
I was brought to CT where they went through the prep steps, flooded me with pain meds,made a slice, placed the catheter, sucked out some tumor cells and put a band-aid on the incision. The cytologists were in the room to count the number of cells that were extracted, so there should be no reason for an "inconclusive" result. Because they flooded me with pain meds I ended up sick, sore and throwing up. I had to stay in recovery for three hours before we were FINALLY released at 5:20pm!
Biopsy Results: Thursday, May 20th.
By the time I arrived back in the day care unit it was around noon. The radiologists felt that they would be able to get precise images in order to biopsy if they used the CT Scan, so we waited until about 1:30pm for an opening in CT.
I was brought to CT where they went through the prep steps, flooded me with pain meds,made a slice, placed the catheter, sucked out some tumor cells and put a band-aid on the incision. The cytologists were in the room to count the number of cells that were extracted, so there should be no reason for an "inconclusive" result. Because they flooded me with pain meds I ended up sick, sore and throwing up. I had to stay in recovery for three hours before we were FINALLY released at 5:20pm!
Biopsy Results: Thursday, May 20th.
Friday, May 7, 2010
Liver Biopsy Date
The liver biopsy has been scheduled for Wednesday, May 12th. This is a full day outpatient procedure.
They feel that the one biopsy of the liver will confirm the diagnosis for both the liver and the lung; but, if the results show otherwise then we will schedule a biopsy for the pleura.
As always, this is a drawn out process; we will not have any results until we go back into BI on Thurs. 5/20
They feel that the one biopsy of the liver will confirm the diagnosis for both the liver and the lung; but, if the results show otherwise then we will schedule a biopsy for the pleura.
As always, this is a drawn out process; we will not have any results until we go back into BI on Thurs. 5/20
Thursday, May 6, 2010
Unexpected Disappointment
I wish I had better news to tell; hell, I wish I received better news today.
Three months ago I had a CT/PET scan done of my chest and abdomen, my first scan following the October surgery. A few new spots had appeared in this scan, but what they actually were, no one knew. The scan showed two new spots in my liver and one spot on the edge of my lung.
Today John and I went into BI to get the results of the CT Scan that was done this past Saturday. Unfortunately those mysterious spots turned out to be quite troublesome. In the past three months the two spots in my liver turned into five spots, and the spot in my pleura (lining of lung) has become significantly larger.
Both Dr. H and Dr. K are convinced that all of the spots are that of the original thymic carcinoma (cancer). I requested to have a biopsy done of at least one of the areas, if not both, just for confirmation.
Last March when John and I decided that we would approach this diagnosis aggressively we went at it with full force, I received an aggressive chemo, radiation and surgery. Because we had chosen the aggressive route in the first place, the doctors aren't sure where to go from here. It's not as if I received a low grade treatment and it came back, we went after it at full force, and it came back (or never went away).
So what options does this leave us? We talked about looking into various clinical trials and alternate chemo therapy treatments. Dr. H is going to do some more research on treatments for my very rare type of cancer. The biopsy will hopefully be set up for sometime next week, we will again meet with Dr. H and try to devise a treatment plan.
I for one do not like not having a plan of attack, and although the doctors at this point think a cure is very unlikely and are looking to slow it down as much as possible, we will do all we can.
Three months ago I had a CT/PET scan done of my chest and abdomen, my first scan following the October surgery. A few new spots had appeared in this scan, but what they actually were, no one knew. The scan showed two new spots in my liver and one spot on the edge of my lung.
Today John and I went into BI to get the results of the CT Scan that was done this past Saturday. Unfortunately those mysterious spots turned out to be quite troublesome. In the past three months the two spots in my liver turned into five spots, and the spot in my pleura (lining of lung) has become significantly larger.
Both Dr. H and Dr. K are convinced that all of the spots are that of the original thymic carcinoma (cancer). I requested to have a biopsy done of at least one of the areas, if not both, just for confirmation.
Last March when John and I decided that we would approach this diagnosis aggressively we went at it with full force, I received an aggressive chemo, radiation and surgery. Because we had chosen the aggressive route in the first place, the doctors aren't sure where to go from here. It's not as if I received a low grade treatment and it came back, we went after it at full force, and it came back (or never went away).
So what options does this leave us? We talked about looking into various clinical trials and alternate chemo therapy treatments. Dr. H is going to do some more research on treatments for my very rare type of cancer. The biopsy will hopefully be set up for sometime next week, we will again meet with Dr. H and try to devise a treatment plan.
I for one do not like not having a plan of attack, and although the doctors at this point think a cure is very unlikely and are looking to slow it down as much as possible, we will do all we can.
Friday, April 16, 2010
Happy Birthday Wishes
I just wanted to take this opportunity to say Happy Birthday to the man who makes battling this worth while each and every day.
To the one who makes me smile when I am down, the one who shines a light into my darkest days, to the one who keeps me strong when I am weak and positive when I am negative; happy birthday to my husband, my love, my absolute everything.
To the one who makes me smile when I am down, the one who shines a light into my darkest days, to the one who keeps me strong when I am weak and positive when I am negative; happy birthday to my husband, my love, my absolute everything.
Tuesday, February 9, 2010
Post Surgery PET/CT Scan
Last Thursday we trudged down to B.I. for the results of my first scan following the October surgery. Someday I will get to use my vacation time to go somewhere other than the hospital.
A few weeks after the surgery, in a follow up blog, I had mentioned that the surgeon told me that all around the cancerous mass that they removed was normal; meaning they successfully removed the entire mass, which still holds true. With that being said, the results of the scan taken in January were "inconclusive".
We'll start with the liver. Way back when, in March, when I was first diagnosed with cancer, there were two spots on my liver that were "highly suspicious" of being cancerous. These spots could not be positively identified, which is why we took the aggressive treatment approach for the thymus; well good for us because these spots are no longer showing cancerous activity! (that's the good news) The PET Scan did however show an additional spot on my liver that can not be identified. This mystery spot appeared on the PET but not the CT (the two scans are run simultaneously), which remains a mystery to all involved. We are hoping that this spot is an imaging error.
Now moving back up to the still sore part of my body... both scans also showed an additional spot to the right of where the surgery occurred. This spot is near the nerve that was of concern during the surgery, this spot they are hoping is just inflammation (swelling).
There is nothing we are able to do about this right now, the spots are too small and difficult to get at for a biopsy. So once again, we play the wait and see game. I will have a CT Scan done Saturday, May 1st. We will again see both Dr. H and Dr. K on Thursday, May 6th to find out the results.
A few weeks after the surgery, in a follow up blog, I had mentioned that the surgeon told me that all around the cancerous mass that they removed was normal; meaning they successfully removed the entire mass, which still holds true. With that being said, the results of the scan taken in January were "inconclusive".
We'll start with the liver. Way back when, in March, when I was first diagnosed with cancer, there were two spots on my liver that were "highly suspicious" of being cancerous. These spots could not be positively identified, which is why we took the aggressive treatment approach for the thymus; well good for us because these spots are no longer showing cancerous activity! (that's the good news) The PET Scan did however show an additional spot on my liver that can not be identified. This mystery spot appeared on the PET but not the CT (the two scans are run simultaneously), which remains a mystery to all involved. We are hoping that this spot is an imaging error.
Now moving back up to the still sore part of my body... both scans also showed an additional spot to the right of where the surgery occurred. This spot is near the nerve that was of concern during the surgery, this spot they are hoping is just inflammation (swelling).
There is nothing we are able to do about this right now, the spots are too small and difficult to get at for a biopsy. So once again, we play the wait and see game. I will have a CT Scan done Saturday, May 1st. We will again see both Dr. H and Dr. K on Thursday, May 6th to find out the results.
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