Well Hellooooooo!
I hope everyone had a great Thanksgiving!! I know it's been a while since I have updated, but it's tough to update something with such a slow progress - nothing seems to change on a noticeable scale.
I started back to work last Monday, November 30th. It's been pretty exhausting, but nice to have a schedule and purpose again.
We headed back into BI today, for another follow-up with Dr. Kent. We got there early, everything went smoothly and we were out by the time our appointment was supposed to start - good stuff!
The knot on the top of the incision hadn't disintegrated like it was supposed to, and seeing it has been driving me crazy! Dr. K cut it off, right there in the office, talk about being productive!
We discussed the fact that my breathing has improved (slightly), but that I am still having difficulties. I have been completely off of the oxygen for about a week now, which is being picked up tonight -- no more kegs of air taking up space in our house! The thought process is still that my breathing should continue to improve, albeit slower than we would all like.
I am once again allowed to drive, be submerged in water, use fragrances, have a glass of wine every now and again, and just about anything else I "think I can handle; and although the bone itself is probably healed the pectoral muscles and everything else in that area is going to be sore for quite a while."
The plan is to have a PET Scan at the end of January and then meet with Dr. H and then Dr. K a few days later to see how everything is going and discuss the images -- it is the imaging results that I am looking forward to the most.
Other than adding the dates of the scan/appointments into this blog when I get them, I will probably not update again until the beginning of February.
Have a fantastic holiday season & happy new year!!!
PET Scan 1/29/10
Dr. Appts. 2/4/10
Tuesday, December 8, 2009
Sunday, November 15, 2009
Doc. appt Follow-up #2
Thursday's appointment went well. We had to be at B.I. for an echo cardiogram at 10am. The tech, assured me she wanted to get "the best pictures possible", which really meant beating me up while she complained about how physically demanding her job is. Does she realize her physical demands of pushing down on an ultra sound probe is separating my ribs so that she can see my heart only a few weeks after my breast bone has been split and I'm no longer taking pain medicine? Listening to her complain wasn't making this process any easier.
After the echo we made our way to the opposite side of East campus to meet with Dr. K (the surgeon) yes, the girl that is on oxygen and is having trouble breathing, lets send her from one side of East to the other. The appointment with Dr. K was fast (thank goodness!). He looked at the incision, and asked a few questions. John and I asked a few questions of our own which resulted in the positives of the day... I can sit in the front seat of the car again! and I no longer have to take iron or folic acid. As for the difficulty breathing we're just going to "assume that it's going to get better", I should still use the oxygen as needed and unless the fevers go over 101 he's not too worried. So once again it's a wait and see game; if things get a lot worse for me I have to call and go in to be seen.
Instead of going back for another visit in 2 weeks, I will have a phone appointment to check in with him. My next on site appointment will hopefully not be for a month.
After the echo we made our way to the opposite side of East campus to meet with Dr. K (the surgeon) yes, the girl that is on oxygen and is having trouble breathing, lets send her from one side of East to the other. The appointment with Dr. K was fast (thank goodness!). He looked at the incision, and asked a few questions. John and I asked a few questions of our own which resulted in the positives of the day... I can sit in the front seat of the car again! and I no longer have to take iron or folic acid. As for the difficulty breathing we're just going to "assume that it's going to get better", I should still use the oxygen as needed and unless the fevers go over 101 he's not too worried. So once again it's a wait and see game; if things get a lot worse for me I have to call and go in to be seen.
Instead of going back for another visit in 2 weeks, I will have a phone appointment to check in with him. My next on site appointment will hopefully not be for a month.
Saturday, November 7, 2009
Woes 2
I have stopped taking the pain medicine, which seems to have stopped the vomiting.
I take Tylenol every 8 hours which takes the edge off of the pain but doesn't give me the ease the pain meds did. The constant pain makes it difficult to take deep breaths, which might be why my breathing has gotten a bit worse instead of better. The Tylenol keeps the fevers at bay, so luckily my temp hasn't crept up to 99.0 in the past 2 days. I still feel like crap, I'm not sure why, it's not a nauseous feeling, it's just a "I feel like crap all the time" feeling. Because of this feeling my days have consisted of sleeping and watching tv, but nothing productive whatsoever.
We decided that it would be a good idea yesterday to take a short ride, get out of the house and get some fresh air for a little bit. Our short ride to the store was awful, painful and took a whole lot out of me.
I have a doctor appointment on Thursday. I'm just hoping that things work themselves out quickly.
PS: I'm sorry for all of the complaining, I was asked to update and that is my status for now.
I take Tylenol every 8 hours which takes the edge off of the pain but doesn't give me the ease the pain meds did. The constant pain makes it difficult to take deep breaths, which might be why my breathing has gotten a bit worse instead of better. The Tylenol keeps the fevers at bay, so luckily my temp hasn't crept up to 99.0 in the past 2 days. I still feel like crap, I'm not sure why, it's not a nauseous feeling, it's just a "I feel like crap all the time" feeling. Because of this feeling my days have consisted of sleeping and watching tv, but nothing productive whatsoever.
We decided that it would be a good idea yesterday to take a short ride, get out of the house and get some fresh air for a little bit. Our short ride to the store was awful, painful and took a whole lot out of me.
I have a doctor appointment on Thursday. I'm just hoping that things work themselves out quickly.
PS: I'm sorry for all of the complaining, I was asked to update and that is my status for now.
Wednesday, November 4, 2009
Recovery Woes
The past few days have consisted of: low grade fevers, decreased breathing, nausea/vomiting, lethargy (I can't sleep enough), I'm still using oxygen and sleeping at a pretty high incline....
These are things that aren't supposed to pop-up at this stage of the recovery game. I'm hesitant to call the doctors because I don't want to end up admitted, but I might not have a choice. I guess we'll see what tomorrow brings.
These are things that aren't supposed to pop-up at this stage of the recovery game. I'm hesitant to call the doctors because I don't want to end up admitted, but I might not have a choice. I guess we'll see what tomorrow brings.
Friday, October 30, 2009
Surgery Follow Up
What was supposed to be a quick trip into BI for Dr. K to say "hey Colleen, lookin' good" turned into a very long, painful day.
Well I will start by enlightening you with my ingenious suggestion to the world; I believe that patients should be able to rent hovercrafts after having surgeries and such -- car rides are The Worst!!!
Our first stop of the morning was a 9:45am trip to radiology for a routine chest x-ray. I was smart enough to wear absolutely no metal, so that I didn't have to change. After the x-ray we made our way up five floors to the oncology department, checked in and waited to be called.
Once in with doctor is where we will acknowledge the "hey Colleen, you're looking good" along with, "we have good news". Those are things we love to hear!
The good news: All of the cancer is gone!!! A good portion of the mass they took out was dead (thank you chemo and radiation); however some of it was still positive for cancer (thank you surgery). It is a good feeling to know that everything we went through was worth it.
The fact that I'm still having difficulty breathing after two weeks concerns the doctors a bit. They conducted a (what felt like a) power walking test around the oncology area. Dr. K was most concerned with a Pulmonary Embolism (blood clot in the lung), which I do have a history of and is very dangerous.
After meeting with Dr. K he sent me to have my blood drawn and then for a CT-A (special type of ct scan that checks for blood clots, fluid in the lung, collapsed lung, etc). Back down the five floors we go.... smart me, I escape the changing process again! This particular scan doesn't require drinking the highlighter fluid, just receiving it through an IV -- which posed to be a problem. After spending approximately an hour and a half/two hours in radiology they sent me back to the oncology office because they couldn't place an IV. I was sent to the chemo area where my chemo nurses placed the IV (first stab!).... so back down to radiology we go. We wait a while, finally I'm called, am brought into the scan room, they have to give me oxygen and carefully position me so that I can breath. (side note: I was given very strict discharge instructions, including limited movements and no lifting, etc... they nurses/techs/docs spent the entire day breaking their own rules) The tech then brings my arms over my head (OUCH!), or at least attempted to... I was able to slowly (and painfully) move my arms a little at a time so they ended up behind my head. More pain of flowing the contrast too quickly through the IV, holding my breath a few times, and we're done.
I instruct them not to remove the IV, and we head back up to oncology to wait for the results. (positive = admittance to the hospital, negative = more testing). The results..... Negative for everything (more good news!). The next step is an echo cardiogram. The scan showed fluid around my heart. A little fluid of normal consistency is normal after a surgery like mine; but too much or too thick could be a problem. The first opening for the cardiac testings was at 6p, which was about two hours from this point. We grabbed a little something to eat, hung around and then went to the testing area. After the echo we headed back up to the oncology office to wait for the results. (too much = admittance, normal = going home!!).. after what felt like forever, we were finally given a normal result. Our new options wer to be admitted, if that's what made us more comfortable, or they would set up a service to deliver Oxygen to the house in order to help with the breathing... Oxygen it is!
I received a phone call when we were about ten minutes from our house, the oxygen delivery person was waiting outside our house --- oooookay. After a very long, painful, stressful day there is some man waiting to give me a lesson about breathing air - awesome. The process of filling the tanks, setting them up in the house and the lesson took a good hour, maybe a little more.
Finally I was able to relax!!! I was so sore and exhausted I didn't even attempt to change my routine. I didn't use the oxygen, I just passed out sitting upright in the chair like I have been the past two weeks.
All in all, we got a lot of good news yesterday.
I will have to go back for an additional follow-up in another couple of weeks.
It just clicked that all of that good news means that I am now -- CANCER FREE!!!
Well I will start by enlightening you with my ingenious suggestion to the world; I believe that patients should be able to rent hovercrafts after having surgeries and such -- car rides are The Worst!!!
Our first stop of the morning was a 9:45am trip to radiology for a routine chest x-ray. I was smart enough to wear absolutely no metal, so that I didn't have to change. After the x-ray we made our way up five floors to the oncology department, checked in and waited to be called.
Once in with doctor is where we will acknowledge the "hey Colleen, you're looking good" along with, "we have good news". Those are things we love to hear!
The good news: All of the cancer is gone!!! A good portion of the mass they took out was dead (thank you chemo and radiation); however some of it was still positive for cancer (thank you surgery). It is a good feeling to know that everything we went through was worth it.
The fact that I'm still having difficulty breathing after two weeks concerns the doctors a bit. They conducted a (what felt like a) power walking test around the oncology area. Dr. K was most concerned with a Pulmonary Embolism (blood clot in the lung), which I do have a history of and is very dangerous.
After meeting with Dr. K he sent me to have my blood drawn and then for a CT-A (special type of ct scan that checks for blood clots, fluid in the lung, collapsed lung, etc). Back down the five floors we go.... smart me, I escape the changing process again! This particular scan doesn't require drinking the highlighter fluid, just receiving it through an IV -- which posed to be a problem. After spending approximately an hour and a half/two hours in radiology they sent me back to the oncology office because they couldn't place an IV. I was sent to the chemo area where my chemo nurses placed the IV (first stab!).... so back down to radiology we go. We wait a while, finally I'm called, am brought into the scan room, they have to give me oxygen and carefully position me so that I can breath. (side note: I was given very strict discharge instructions, including limited movements and no lifting, etc... they nurses/techs/docs spent the entire day breaking their own rules) The tech then brings my arms over my head (OUCH!), or at least attempted to... I was able to slowly (and painfully) move my arms a little at a time so they ended up behind my head. More pain of flowing the contrast too quickly through the IV, holding my breath a few times, and we're done.
I instruct them not to remove the IV, and we head back up to oncology to wait for the results. (positive = admittance to the hospital, negative = more testing). The results..... Negative for everything (more good news!). The next step is an echo cardiogram. The scan showed fluid around my heart. A little fluid of normal consistency is normal after a surgery like mine; but too much or too thick could be a problem. The first opening for the cardiac testings was at 6p, which was about two hours from this point. We grabbed a little something to eat, hung around and then went to the testing area. After the echo we headed back up to the oncology office to wait for the results. (too much = admittance, normal = going home!!).. after what felt like forever, we were finally given a normal result. Our new options wer to be admitted, if that's what made us more comfortable, or they would set up a service to deliver Oxygen to the house in order to help with the breathing... Oxygen it is!
I received a phone call when we were about ten minutes from our house, the oxygen delivery person was waiting outside our house --- oooookay. After a very long, painful, stressful day there is some man waiting to give me a lesson about breathing air - awesome. The process of filling the tanks, setting them up in the house and the lesson took a good hour, maybe a little more.
Finally I was able to relax!!! I was so sore and exhausted I didn't even attempt to change my routine. I didn't use the oxygen, I just passed out sitting upright in the chair like I have been the past two weeks.
All in all, we got a lot of good news yesterday.
I will have to go back for an additional follow-up in another couple of weeks.
It just clicked that all of that good news means that I am now -- CANCER FREE!!!
Saturday, October 24, 2009
5 days home
Well I've been home for five days.
There aren't many updates...
My body still looks like a cutting board; though slowly healing.
My breathing is still labored and shallow. I still am forced to sleep upright in our living room chair (with my Love only steps away on the couch - it really doesn't get any better than him!).
I can not move my upper body or arms certain ways, lift or carry anything. At this point it's still a lot of can not's, but with each day that passes, a gaping whole in my skin might get a millimeter smaller, or I am able to walk for a minute more.. these are things things that I have to keep my eyes on. More importantly, I have to keep in mind that the cancerous mass is no longer there and each cell that is created in my body is now healthy and strong. Of course I have not been back for this to be confirmed by the experts; but I know it to be true.
We go back for a follow-up on Thursday, where I will have a lot of questions as to how my recovery is progressing. I feel like I should be bouncing back quicker than I am (even though they told me 2 months before I'll be able to do anything)... I like specifics.
I'm not sure exactly what Thursday will entail, but I'm sure they will do blood work, seeing I have been on a few supplements that I was lacking post-op. I know at some point a scan of the area will be done - the results to this not yet scheduled scan is what I look forward to most.
There aren't many updates...
My body still looks like a cutting board; though slowly healing.
My breathing is still labored and shallow. I still am forced to sleep upright in our living room chair (with my Love only steps away on the couch - it really doesn't get any better than him!).
I can not move my upper body or arms certain ways, lift or carry anything. At this point it's still a lot of can not's, but with each day that passes, a gaping whole in my skin might get a millimeter smaller, or I am able to walk for a minute more.. these are things things that I have to keep my eyes on. More importantly, I have to keep in mind that the cancerous mass is no longer there and each cell that is created in my body is now healthy and strong. Of course I have not been back for this to be confirmed by the experts; but I know it to be true.
We go back for a follow-up on Thursday, where I will have a lot of questions as to how my recovery is progressing. I feel like I should be bouncing back quicker than I am (even though they told me 2 months before I'll be able to do anything)... I like specifics.
I'm not sure exactly what Thursday will entail, but I'm sure they will do blood work, seeing I have been on a few supplements that I was lacking post-op. I know at some point a scan of the area will be done - the results to this not yet scheduled scan is what I look forward to most.
Monday, October 19, 2009
Home Sweet Home
It is Monday afternoon and I am home!
The first thing I want to say is what a fantastic job John did of updating the blog for you all! There was a lot going on for him and a lot to take care of, but he still managed to update all of you as much as he could and still be there for me... So a special thank you my love, for absolutely everything you do and are.
And then of course a thank you to all of you for looking here for updates, it helped us out a lot, and gave us the ability to give you more details than we would have been able to otherwise!
There is no reason to go back through everything that John has already written. So as of today, I am home! I am in a Whole lot of pain, have very limited movements, and have a lot of difficulty breathing a lot of the time. My hands, arms and feet are still swollen, and I have incisions galore! So it's not pretty to say the least; but I'm sure that it's going to get better from here on out!
We have a follow-up with Dr. K on Thr. 10/29
The first thing I want to say is what a fantastic job John did of updating the blog for you all! There was a lot going on for him and a lot to take care of, but he still managed to update all of you as much as he could and still be there for me... So a special thank you my love, for absolutely everything you do and are.
And then of course a thank you to all of you for looking here for updates, it helped us out a lot, and gave us the ability to give you more details than we would have been able to otherwise!
There is no reason to go back through everything that John has already written. So as of today, I am home! I am in a Whole lot of pain, have very limited movements, and have a lot of difficulty breathing a lot of the time. My hands, arms and feet are still swollen, and I have incisions galore! So it's not pretty to say the least; but I'm sure that it's going to get better from here on out!
We have a follow-up with Dr. K on Thr. 10/29
Sunday, October 18, 2009
4/5th Day After the Surgery
Sorry for the lack of updates but my computer was not working at the hospital and I haven’t been home Since Friday morning.
Well Colleen is still advancing at a excellent rate
Currently Status as of 10/18/09 (12 pm):
- Normal diet
- Chest tube out
- 1 IV left
- Pretty much off the Oxygen
- Extreme Pain (but meds are somewhat helping…. I know easy for me to say)
This afternoon:
12 pm Ultrasound
1 pm x-ray
Friday, October 16, 2009
2nd day after surgey
My computer is not working at the moment so im going to be real short seeing I am doing this on my phone.
Colleen did awesome today. She got rid of all Iv's but 2 and one chest tube. She got up from bed to a chair and then walked. Biggest acheivment is she is out of Icu and moved to a regular room.
Well I can't type anymore so I will update more tomorrow
Colleen did awesome today. She got rid of all Iv's but 2 and one chest tube. She got up from bed to a chair and then walked. Biggest acheivment is she is out of Icu and moved to a regular room.
Well I can't type anymore so I will update more tomorrow
Thursday, October 15, 2009
Day 1 after surgery (10/15/09)
Doctor’s plan/ Goal for today:
- Remove breathing tube by the end of the day.
- Get out of bed.
Colleen’s plan/Goal for today:
- Remove the breathing tube before noon (really First thing).
- Be able to start to be alert and talk.
- Get out of bed (not really colleens but I threw it in there)
- To be pretty close to breathing without any oxygen help.
- To continue being positive
Well I am happy to report Colleen accomplished all of the Goals.
She was able to do limited movement in bed, talk and give me commands all day. (Thank God I was beginning to be completely lost). Besides all these great things she got plenty of rest and once again impressed the doctors.
Currently she still has 5 Iv’s, 2 ‘lung drains” for lack of words to come out. She is still in a lot of pain (as you could imagine) and very thirsty because she is only allowed ice chips (SHE IS NOT HAPPY ABOUT).
Tomorrows Plan/Goal:
- Take out 3 of the 5 Iv’s
- Start the process of taken out “lung drains” which could be a few days.
- Move from ICU to Surgical room.
I have told her about all the prayers and thoughts people have expressed to me. She smiled and said I love them all and aren’t they so great. So from the bottom of my heart I would like to thank all of you for the help in both prayers/thoughts and in keeping her spirits up.
Seeing it will now be little steps daily the BLOG probably will be a little shorter but the steps to Colleens recovery will be huge. I am so proud of all her hard work, which I have watched not only today but also throughout the whole process.
Wednesday, October 14, 2009
Surgery Day
Warning all entries to the BLOG will possibly have misspelled, bad grammar and not even achieve the great writing skills of Colleen.
Monday, October 12, 2009
Last Post Before Surgery!
As I pack for my hopefully short stay at B.I., I realized that I never let you know how Saturday went.
Well, as everything else in our lives, complicated would explain it best.
We arrived right on time and no one was in the office; so after hunting someone down, filling out the forms (that I've filled out at least 150 times), the radiology tech said that she would be right back for me, so we sat down and waited. Approximately 40 minutes later I asked if the Tech had forgotten about me, she said no, but called out to make sure. A different Tech came out shortly after and said that it is not just a CT Scan that my surgeons want, but a complex scan that is not ordinarily performed. With all I've been through, I'm somehow not surprised! The tech explained that they were trying to get a hold of the doctors to figure it all out.
So again, we waited -- with the entertainment of a lady reading a restaurant menu for the half hour she waited and the man wearing the "old guys rule" t-shirt speaking openly about everything.
After a while a Tech came out to assure me that they were still working on it; they were figuring out if they will need one IV or two. So I immediately told them that it is always difficult to place an IV in me and that they might want to get started on one asap, just in case.
Nope, they didn't believe me. When I was finally taken back into the scan room, they had me lay down on the scan table and told me that they were placing two IVs, one in each arm -- AT THE SAME TIME!!! Seriously!! So I took a deep breath and went along with the craziness.
Right arm man succeeded with one stick, some fishing and floating. Left arm woman, not so lucky. Instead of going through all of the details of the left arm, I will just tell you that after 2 Tech's and an IV nurse -- which accumulated to 9 sticks (each with a lot of fishing and floating), I did not end up with an IV in my left arm.
The test was to check the veins in my chest. The contrast was supposed to be pumped through both arms (at the same time) and the scan would highlight all of the blood vessels that would be available in case I had to be put on bypass during surgery. So, with only one IV they would pump the contrast and scan, then wait just about 3 minutes (for the contrast to circulate) and then scan again. They chose not to tell me this option when 3 or 4 times I asked if the second IV was actually necessary.
We finally were able to leave B.I. at 5:25pm.
So Wednesday is the day. I ask you all to please be patient; with the understanding that I appreciate all of your love and concern. I am to arrive at 8:00am; however, my OR time isn't until 9:30am. The surgery is to last approximately 5hrs. John will update the website, but if I had to guess it won't be until evening.
I love you all! Let's hope this goes smoothly and that the surgery will rid me of all cancer Forever!!
Well, as everything else in our lives, complicated would explain it best.
We arrived right on time and no one was in the office; so after hunting someone down, filling out the forms (that I've filled out at least 150 times), the radiology tech said that she would be right back for me, so we sat down and waited. Approximately 40 minutes later I asked if the Tech had forgotten about me, she said no, but called out to make sure. A different Tech came out shortly after and said that it is not just a CT Scan that my surgeons want, but a complex scan that is not ordinarily performed. With all I've been through, I'm somehow not surprised! The tech explained that they were trying to get a hold of the doctors to figure it all out.
So again, we waited -- with the entertainment of a lady reading a restaurant menu for the half hour she waited and the man wearing the "old guys rule" t-shirt speaking openly about everything.
After a while a Tech came out to assure me that they were still working on it; they were figuring out if they will need one IV or two. So I immediately told them that it is always difficult to place an IV in me and that they might want to get started on one asap, just in case.
Nope, they didn't believe me. When I was finally taken back into the scan room, they had me lay down on the scan table and told me that they were placing two IVs, one in each arm -- AT THE SAME TIME!!! Seriously!! So I took a deep breath and went along with the craziness.
Right arm man succeeded with one stick, some fishing and floating. Left arm woman, not so lucky. Instead of going through all of the details of the left arm, I will just tell you that after 2 Tech's and an IV nurse -- which accumulated to 9 sticks (each with a lot of fishing and floating), I did not end up with an IV in my left arm.
The test was to check the veins in my chest. The contrast was supposed to be pumped through both arms (at the same time) and the scan would highlight all of the blood vessels that would be available in case I had to be put on bypass during surgery. So, with only one IV they would pump the contrast and scan, then wait just about 3 minutes (for the contrast to circulate) and then scan again. They chose not to tell me this option when 3 or 4 times I asked if the second IV was actually necessary.
We finally were able to leave B.I. at 5:25pm.
So Wednesday is the day. I ask you all to please be patient; with the understanding that I appreciate all of your love and concern. I am to arrive at 8:00am; however, my OR time isn't until 9:30am. The surgery is to last approximately 5hrs. John will update the website, but if I had to guess it won't be until evening.
I love you all! Let's hope this goes smoothly and that the surgery will rid me of all cancer Forever!!
Friday, October 9, 2009
Last Minute CT Scan
Well it's Friday at 1:25 in the afternoon and I get a call from Dr. K's office.
Evidently, "the doctors have been talking and want you to have a CT Scan before the surgery, and the only available appointment is tomorrow at 2:15pm".
I am not happy about this fact.
My last pre-surgery weekend and I have to spend Saturday from 2:00-4:30p (ish) in radiology drinking liquid highlighters!?
Evidently, "the doctors have been talking and want you to have a CT Scan before the surgery, and the only available appointment is tomorrow at 2:15pm".
I am not happy about this fact.
My last pre-surgery weekend and I have to spend Saturday from 2:00-4:30p (ish) in radiology drinking liquid highlighters!?
Wednesday, October 7, 2009
Pre-Op
Pre-Op was very long!
But just the gist of it:
Paperwork
Wait
Brought to a room
Wait
8 viles of Blood
Blood Pressure, etc.
Wait
EKG
Wait
Anesthesia Physical/medical history
Wait
Nurse: medical history, pre-op instructions
Wait
Sent to Radiology
Wait with a bunch of sick hacking people
Chest X-Ray
Make a run for the elevator and get out of there!
6 days until surgery...
But just the gist of it:
Paperwork
Wait
Brought to a room
Wait
8 viles of Blood
Blood Pressure, etc.
Wait
EKG
Wait
Anesthesia Physical/medical history
Wait
Nurse: medical history, pre-op instructions
Wait
Sent to Radiology
Wait with a bunch of sick hacking people
Chest X-Ray
Make a run for the elevator and get out of there!
6 days until surgery...
Thursday, October 1, 2009
Surgery Date
10/7/09
Pre-Op
7:45am-8:45am
* Review of Medical History
* Blood work
* Meet Anesthesia Team, they must okay surgery
* West Campus
10/14/09
Surgery
8:00am Arrival
9:30am Surgery time
* Estimated surgery time is 4 to 5 hrs
* Will remain in B.I. 3 to 7 days
* West Campus
John and I have had several people ask us what we need and what they can send us. We are grateful everyday for the extraordinary support system that we are so lucky to have. I modestly reply this request only for those who seek the answer. This entire process has been a financial burden, not to mention John was recently laid-off, which has undoubtedly added a signifcant amount of stress. Monetary donations and gift cards to places such as Hannaford supermarket or local gas stations are what we find to be most useful. Please do not feel this message is here because we are asking for gifts; it is just a simple reply to those who are looking for a way to help.
Much Love,
Colleen
Pre-Op
7:45am-8:45am
* Review of Medical History
* Blood work
* Meet Anesthesia Team, they must okay surgery
* West Campus
10/14/09
Surgery
8:00am Arrival
9:30am Surgery time
* Estimated surgery time is 4 to 5 hrs
* Will remain in B.I. 3 to 7 days
* West Campus
John and I have had several people ask us what we need and what they can send us. We are grateful everyday for the extraordinary support system that we are so lucky to have. I modestly reply this request only for those who seek the answer. This entire process has been a financial burden, not to mention John was recently laid-off, which has undoubtedly added a signifcant amount of stress. Monetary donations and gift cards to places such as Hannaford supermarket or local gas stations are what we find to be most useful. Please do not feel this message is here because we are asking for gifts; it is just a simple reply to those who are looking for a way to help.
Much Love,
Colleen
Thursday, September 24, 2009
A Major Step in the Elimination Process
Last Thursday I had a PET Scan done to find out how effective the treatments had been.The scan also gave the doctors a current resource in order to make the decision of "what to do next".
Today we met with both Dr. H (oncologist) and Dr. K (thoracic surgeon).
Good News! Since we have started treatments the main thymic mass has shrunk 50% and the smaller thymic mass is non-existent on the imaging (!!!) -- which leaves just the main thymic mass at 3 1/2 cm. The liver mass has not changed in size whatsoever, however it has become less "reactive" to the scan injection. The fact that the mass has changed in reaction but not size confuses the doctors on what it might be. So the plan with the liver = keep an eye on it, but don't let it effect our decision making.
Even though chemo and radiation has shrunk the mass significantly, Dr. H does not recommend continuing with chemo as a permanent treatment for the thymic mass. Which I agree with.
Which leaves..... The Plan, although very serious, is to do surgery. My team of doctors will sit down once again this afternoon to discuss every angle of the surgery. If everyone is still on board and nothing unexpected pops up, we will set a date.
As I mentioned above this surgery is very serious.
The thymic mass lies under my breastbone and on top of my heart.
The surgeon will cut through my sternum (breast bone) to access the area.
There is no way to tell from the scans, but if the mass has grown into the Vena Cava (a major vein that drains blood from your head, arms and chest) they will have to remove any part of the vein that is cancerous and reconstruct the vein with a graft (a plastic piece). While they are working on the vein I will be put on a bypass machine, which runs the risk of additional complications. As I mentioned, this might not even be an issue; but we have to be prepared just in case it is.
Also in this area lies 2 nerves, these nerves are in charge of raising your diaphram when you breath. It is very likely that one of these nerves will be removed or cut during the surgery, if both nerves are in the cancerous area they will be forced to leave one there (with the cancerous tissue). Not having one of these nerves will cause shortness of breath and exhaustion. The muscles around the lungs will have to work twice as hard and adapt to this missing nerve; even with this compensation I am told that I will still have difficulties from strenuous exercise in the future [still better than having cancer]. So as you can see not having either isn't an option.
The surgery without complications should take "a few hours", the surgery with the complications mentioned above will take "a few hours on top of that". I will be in the hospital anywhere from 3 days to a week. From there I should be able to go home; however, the expectation is that I will recover at home for 3 weeks after that.
The list of possible complications that were listed on the consent sheet: bleeding, infection, stroke, death.
The list of possible benefits that were listed on the consent sheet: possible cure from cancer.
I am sure this is a lot for you to intake, I know that I asked a bazillion questions.
If you know my medical history, I'm sure you are just a degree below the nervousness than I am feeling -- but everything will be fine! I have a lot of living left to do.
I'll tell you the secret to my confidence... it's all of you (and some say I might be just a bit stubborn). Anyone who has called, text, IMed, Facebooked, Commented or Seen me in person is responsible for how well everything has gone. Throughout this horrific experience I have been reminded on a daily basis why it's worth it and how lucky I am to know such wonderful people. With John attached to my hip (and heart) every step of every day and all of you who have shown your support keeps our confidence and good spirits high -- Thank you.
When I know the date of the surgery or any other information, I will be sure to post it - but I can assure you that it will not be before Christina & Taylor's Wedding!!! ;0) (10/3/09)
Today we met with both Dr. H (oncologist) and Dr. K (thoracic surgeon).
Good News! Since we have started treatments the main thymic mass has shrunk 50% and the smaller thymic mass is non-existent on the imaging (!!!) -- which leaves just the main thymic mass at 3 1/2 cm. The liver mass has not changed in size whatsoever, however it has become less "reactive" to the scan injection. The fact that the mass has changed in reaction but not size confuses the doctors on what it might be. So the plan with the liver = keep an eye on it, but don't let it effect our decision making.
Even though chemo and radiation has shrunk the mass significantly, Dr. H does not recommend continuing with chemo as a permanent treatment for the thymic mass. Which I agree with.
Which leaves..... The Plan, although very serious, is to do surgery. My team of doctors will sit down once again this afternoon to discuss every angle of the surgery. If everyone is still on board and nothing unexpected pops up, we will set a date.
As I mentioned above this surgery is very serious.
The thymic mass lies under my breastbone and on top of my heart.
The surgeon will cut through my sternum (breast bone) to access the area.
There is no way to tell from the scans, but if the mass has grown into the Vena Cava (a major vein that drains blood from your head, arms and chest) they will have to remove any part of the vein that is cancerous and reconstruct the vein with a graft (a plastic piece). While they are working on the vein I will be put on a bypass machine, which runs the risk of additional complications. As I mentioned, this might not even be an issue; but we have to be prepared just in case it is.
Also in this area lies 2 nerves, these nerves are in charge of raising your diaphram when you breath. It is very likely that one of these nerves will be removed or cut during the surgery, if both nerves are in the cancerous area they will be forced to leave one there (with the cancerous tissue). Not having one of these nerves will cause shortness of breath and exhaustion. The muscles around the lungs will have to work twice as hard and adapt to this missing nerve; even with this compensation I am told that I will still have difficulties from strenuous exercise in the future [still better than having cancer]. So as you can see not having either isn't an option.
The surgery without complications should take "a few hours", the surgery with the complications mentioned above will take "a few hours on top of that". I will be in the hospital anywhere from 3 days to a week. From there I should be able to go home; however, the expectation is that I will recover at home for 3 weeks after that.
The list of possible complications that were listed on the consent sheet: bleeding, infection, stroke, death.
The list of possible benefits that were listed on the consent sheet: possible cure from cancer.
I am sure this is a lot for you to intake, I know that I asked a bazillion questions.
If you know my medical history, I'm sure you are just a degree below the nervousness than I am feeling -- but everything will be fine! I have a lot of living left to do.
I'll tell you the secret to my confidence... it's all of you (and some say I might be just a bit stubborn). Anyone who has called, text, IMed, Facebooked, Commented or Seen me in person is responsible for how well everything has gone. Throughout this horrific experience I have been reminded on a daily basis why it's worth it and how lucky I am to know such wonderful people. With John attached to my hip (and heart) every step of every day and all of you who have shown your support keeps our confidence and good spirits high -- Thank you.
When I know the date of the surgery or any other information, I will be sure to post it - but I can assure you that it will not be before Christina & Taylor's Wedding!!! ;0) (10/3/09)
Friday, September 4, 2009
A break in the madness
I should have updated sooner - my apologies.
Radiation is over!!!
My last day of radiation was Wednesday August 26th - what a relief! My radiation oncologist decided to cut out 3 of my treatments. The last week of treatment the radiation is directed from different angles inorder to attack the cancer from all sides. Due to the location of my tumors, attacking them at these angles too many times would cause an increased risk of scarring the lungs.
So now there is a break from treatments for a little bit.
As previously mentioned I have a PET Scan coming up, on the 18th of September; however, I will not have any results from this until the following Thursday, September 24th. On the 24th John and I will sit down with both my oncologist and the oncology surgeon to decide what the next best treatment plan will be.
But for now, I get to sleep little later each morning and completely avoid Rt. 3 and 128 --we're all happy for that!
OH! and my hair seems to be growing back!!
I leave you with all of this good news to hopefully bring you more of the same following the appointment on the 24th. Happy Labor Day Weekend!
Radiation is over!!!
My last day of radiation was Wednesday August 26th - what a relief! My radiation oncologist decided to cut out 3 of my treatments. The last week of treatment the radiation is directed from different angles inorder to attack the cancer from all sides. Due to the location of my tumors, attacking them at these angles too many times would cause an increased risk of scarring the lungs.
So now there is a break from treatments for a little bit.
As previously mentioned I have a PET Scan coming up, on the 18th of September; however, I will not have any results from this until the following Thursday, September 24th. On the 24th John and I will sit down with both my oncologist and the oncology surgeon to decide what the next best treatment plan will be.
But for now, I get to sleep little later each morning and completely avoid Rt. 3 and 128 --we're all happy for that!
OH! and my hair seems to be growing back!!
I leave you with all of this good news to hopefully bring you more of the same following the appointment on the 24th. Happy Labor Day Weekend!
Tuesday, August 25, 2009
And The Numbers Have Risen!
It might have taken an additional 3 weeks, but finally we got the go ahead for this cycle of chemo!
One would think that after postponing it so long that my veins would have had a nice break and an opportunity to dilate generously - well this was not the case. My veins must have taken it upon themselves to declare their end of usage. It took 8 warm packs, 4 nurses, and 7 attempts to place the IV today. The end result was a vein that the nurses couldn't see, or couldn't feel, they just knew that "anatomically it had to be there......... laying very close to a nerve" in between 2 bones on the side of my wrist.
Well, one or several of you out there must have had collaborating good thoughts all at once, because it threaded with ease and worked wonderfully!
Although immediately after this all of the nurses agreed that they were done trying to find my veins; if my oncologist wanted to continue with chemo, I will have to get a port. A port is a surgically placed line in the left side of your chest that can be accessed easily to attach an IV.
This will however be another factor in the decision making after the results of the PetScan are received. (PetScan 9/18, results 9/24)
For one reason or another I have been really tired and nauseous all day - this preceded receiving the chemo. I would like to pass it off to the morning stress, and although the sick feeling has lingered all day and is still with me; I remain confident in its disappearance any minute now.....
So thank you all for your good thoughts and prayers - we made it through another IV placement - congratulations!
John and I are looking forward my final radiation appointment tomorrow morning!
One would think that after postponing it so long that my veins would have had a nice break and an opportunity to dilate generously - well this was not the case. My veins must have taken it upon themselves to declare their end of usage. It took 8 warm packs, 4 nurses, and 7 attempts to place the IV today. The end result was a vein that the nurses couldn't see, or couldn't feel, they just knew that "anatomically it had to be there......... laying very close to a nerve" in between 2 bones on the side of my wrist.
Well, one or several of you out there must have had collaborating good thoughts all at once, because it threaded with ease and worked wonderfully!
Although immediately after this all of the nurses agreed that they were done trying to find my veins; if my oncologist wanted to continue with chemo, I will have to get a port. A port is a surgically placed line in the left side of your chest that can be accessed easily to attach an IV.
This will however be another factor in the decision making after the results of the PetScan are received. (PetScan 9/18, results 9/24)
For one reason or another I have been really tired and nauseous all day - this preceded receiving the chemo. I would like to pass it off to the morning stress, and although the sick feeling has lingered all day and is still with me; I remain confident in its disappearance any minute now.....
So thank you all for your good thoughts and prayers - we made it through another IV placement - congratulations!
John and I are looking forward my final radiation appointment tomorrow morning!
Thursday, August 20, 2009
Appointment Update - updated 8/24
Tue. Aug 25th (pending a normal blood count)
Chemo @ 9a
Wed. Aug 26th
Chemo @ 11a
Thur. Aug 27th
Chemo @ 12p
side note: Wed. 8/24 last day of radiation!!!! :o)
Fri. Sept 18th
PetScan @ 10:15am
Thur. Sept 24th
Getting the Results of the PETScan & coming up with the next step of the cancer elimination plan! This day can't come fast enough!!
Dr. Huberman (oncologist) @ 10a
Dr. Kent (oncology surgeon) @ 10:30a
Chemo @ 9a
Wed. Aug 26th
Chemo @ 11a
Thur. Aug 27th
Chemo @ 12p
side note: Wed. 8/24 last day of radiation!!!! :o)
Fri. Sept 18th
PetScan @ 10:15am
Thur. Sept 24th
Getting the Results of the PETScan & coming up with the next step of the cancer elimination plan! This day can't come fast enough!!
Dr. Huberman (oncologist) @ 10a
Dr. Kent (oncology surgeon) @ 10:30a
Wednesday, August 19, 2009
Chemo Postponed - Yes, Again!
My white count is still too low.
We are rescheduled for Tue/Wed/Thr; assuming my white count is back where it should be.
We are rescheduled for Tue/Wed/Thr; assuming my white count is back where it should be.
Thursday, August 13, 2009
Chemo Postponed - again
This sessions chemo has been postponed until next week, for the same reason as last time. My blood work came back too low to administer chemo therapy. Because we are going to a wedding next weekend; my doctors are letting me do chemo Wed, Thr, Fri (assuming my blood work comes back normal). Postponing chemo a week actually works out well for me, I will only have to have this next chemo treatment to go through before the Pet Scan instead of having 2 treatments before the scan. A Pet Scan will be scheduled for mid-September; we will sit down with my oncologist, the radiation oncologist and the oncologist surgeon to come up with the next plan of attack.
A radiation update:
16 treatments down with 12 to go! The treatments have made me very tired all the time, and recently have made my throat sore. The combination of the two treatments have made me really lazy and boring.. I dont' get much done, fall asleep really early and am really starting to hate my morning alarm.
I'm looking forward to the Pet Scan results!
A radiation update:
16 treatments down with 12 to go! The treatments have made me very tired all the time, and recently have made my throat sore. The combination of the two treatments have made me really lazy and boring.. I dont' get much done, fall asleep really early and am really starting to hate my morning alarm.
I'm looking forward to the Pet Scan results!
Saturday, July 25, 2009
chemo round 4 & the start of radiation
On thursday, July 23rd I had my first radiation treatment and then my first day of round 4 chemo. Radiation went fine on Thursday, then we spent all day at BI; it was a very long day!
I woke up very sick on Friday morning, I spent most of the day yesterday throwing up; however, luckily I made it through radiation without moving (that could be disasterous, we don't want to burn the good cells). Today, Saturday, I'm still feeling pretty lowsy, we went back to BI for the last day of chemo for round 4 (no radiation on the weekends - hooray!). Luckily we have tomorrow off, then its back to radiation Monday thru Friday. In 11 days or so I have to have my white count checked to make sure my immune system is doing alright.
We believe that the sickness caused this round was because we eliminated the strongest (most expensive) anti-nausea drug because I had done so well switching the the Carbo-Platnium last time. Well we ended up going out and buying the Emend ($$$ anti-nausea med after all), so hopefully it kicks in and I feel better soon. Lesson learned, don't skimp out on the anti-nausea meds, they help!
I woke up very sick on Friday morning, I spent most of the day yesterday throwing up; however, luckily I made it through radiation without moving (that could be disasterous, we don't want to burn the good cells). Today, Saturday, I'm still feeling pretty lowsy, we went back to BI for the last day of chemo for round 4 (no radiation on the weekends - hooray!). Luckily we have tomorrow off, then its back to radiation Monday thru Friday. In 11 days or so I have to have my white count checked to make sure my immune system is doing alright.
We believe that the sickness caused this round was because we eliminated the strongest (most expensive) anti-nausea drug because I had done so well switching the the Carbo-Platnium last time. Well we ended up going out and buying the Emend ($$$ anti-nausea med after all), so hopefully it kicks in and I feel better soon. Lesson learned, don't skimp out on the anti-nausea meds, they help!
Monday, July 20, 2009
We Are Adding a Lazer Show!
The outcome of the previously mentioned good news brings us to a more aggressive treatment plan; we are adding radiation into the mix!
Tomorrow, Tuesday July 21st, we are going to BI for "mapping"; which is where they use a CT Scan and contrast to map out and tattoo the spots where the masses exactly lie. This will allow a quick easy set up on a daily basis for the actual treatment. Radiation treatment will be Monday through Friday for 5 1/2 weeks (28 treatments).
Because I'm such a "complicated case" Dr. B. (the radiation doc) wants to follow my treatment personally; therefore the only off site option was Waltham - we'll take it! When it comes to going M-F for treatment Waltham is a much better option than Boston. The only catch comes on days when I also have chemotherapy. On chemo days we have to go to Waltham for radiation and then straight to BI for chemo. (Coffee Anyone?!) My first day of radiation is Thursday, July 23rd, which also begins my next round of chemo (thr, fri, sat).
We have also decided to eliminate (we=Dr. H) the shot that increases my white cell count; evidently when a person is doing chemo and radiation the shot doesn't help enough to benefit the situation. Which is great news, because then we will actually have one day out of the week that we won't have to go to BI! It's just a matter of being very careful to stay away from germs.
Additional Side Effects:
Radiation causes additional fatigue (tiredness) on top of the chemo fatigue, (6pm bedtime here I come!) It also causes scaring of the lungs, sore throat, and cough.
The extended plan:
As of now, we are planned to have 28 radiation treatments and two rounds of chemo; after this I will go for a PET Scan (full body). On the PET Scan they will be looking to see that: the (hopefully smaller) size of the masses in the thymus, making sure the liver masses haven't changed, and making sure there aren't any new masses elsewhere. If all of the above is true then we will talk about the possibility of surgery, removing what is left of the masses in the thymus.
I will continue to work through all of this. Dr. B assured me that I could get 7am appointments in Waltham that would last 15-20 minutes each, from there I will go straight to work and hopefully not hit too much traffic. The Carbo platinum chemo also helps with being able to work; last treatment I was in a much better condition than previous treatments.
It'll be busy, tiring and expensive...
John and I know that the road to recovery is never an easy one, but it will forever remain an optimistic road!
Tomorrow, Tuesday July 21st, we are going to BI for "mapping"; which is where they use a CT Scan and contrast to map out and tattoo the spots where the masses exactly lie. This will allow a quick easy set up on a daily basis for the actual treatment. Radiation treatment will be Monday through Friday for 5 1/2 weeks (28 treatments).
Because I'm such a "complicated case" Dr. B. (the radiation doc) wants to follow my treatment personally; therefore the only off site option was Waltham - we'll take it! When it comes to going M-F for treatment Waltham is a much better option than Boston. The only catch comes on days when I also have chemotherapy. On chemo days we have to go to Waltham for radiation and then straight to BI for chemo. (Coffee Anyone?!) My first day of radiation is Thursday, July 23rd, which also begins my next round of chemo (thr, fri, sat).
We have also decided to eliminate (we=Dr. H) the shot that increases my white cell count; evidently when a person is doing chemo and radiation the shot doesn't help enough to benefit the situation. Which is great news, because then we will actually have one day out of the week that we won't have to go to BI! It's just a matter of being very careful to stay away from germs.
Additional Side Effects:
Radiation causes additional fatigue (tiredness) on top of the chemo fatigue, (6pm bedtime here I come!) It also causes scaring of the lungs, sore throat, and cough.
The extended plan:
As of now, we are planned to have 28 radiation treatments and two rounds of chemo; after this I will go for a PET Scan (full body). On the PET Scan they will be looking to see that: the (hopefully smaller) size of the masses in the thymus, making sure the liver masses haven't changed, and making sure there aren't any new masses elsewhere. If all of the above is true then we will talk about the possibility of surgery, removing what is left of the masses in the thymus.
I will continue to work through all of this. Dr. B assured me that I could get 7am appointments in Waltham that would last 15-20 minutes each, from there I will go straight to work and hopefully not hit too much traffic. The Carbo platinum chemo also helps with being able to work; last treatment I was in a much better condition than previous treatments.
It'll be busy, tiring and expensive...
John and I know that the road to recovery is never an easy one, but it will forever remain an optimistic road!
Thursday, July 2, 2009
Optimism
We went into BI this morning to get the results of the CTscan that I had done this past Saturday. Doctor H. was very pleased that the thymus mass had "shrunk considerably", the liver doesn't look like it has changed much but we can't be sure.
The decision has been made to change the type of chemo that I am receiving. The new type that I began today, should give me less nausea and vomitting, with a very slight decrease in effectiveness (definately worth it). Dr. H. said to us that he was going to present and discuss my most recent scan with the other doctors and get everyone's thoughts on what the next step should be. Later in the day he came back to say that we will be meeting with the radiation doctor in 2 weeks. We all agree that we want to be aggressive in fighting the cancer that we know I have (in the thymus). After a couple more treatments we will do a PETscan to see what things look like. The only risk that is higher with this type of chemo is that it will lower my white count significantly, which means going in for a shot on Sunday that will help replenish the white count.
The IV took 3 stabs today. Putting a port in (permanent line that they can tap into for IVs, etc) is looking like it might end up happening. My nurse said that she would give me one more treatment round and see how it goes.
So overall, it was positive feedback - we are defiantely happy with the tentative news. This round of chemo will be today, tomorrow, Saturday, and the shot on Sunday.
We meet with the radiation doctor on Thr. July 16th, I'll let you know how it goes!
PS: it is painful to type with an IV in your hand - ouch!
The decision has been made to change the type of chemo that I am receiving. The new type that I began today, should give me less nausea and vomitting, with a very slight decrease in effectiveness (definately worth it). Dr. H. said to us that he was going to present and discuss my most recent scan with the other doctors and get everyone's thoughts on what the next step should be. Later in the day he came back to say that we will be meeting with the radiation doctor in 2 weeks. We all agree that we want to be aggressive in fighting the cancer that we know I have (in the thymus). After a couple more treatments we will do a PETscan to see what things look like. The only risk that is higher with this type of chemo is that it will lower my white count significantly, which means going in for a shot on Sunday that will help replenish the white count.
The IV took 3 stabs today. Putting a port in (permanent line that they can tap into for IVs, etc) is looking like it might end up happening. My nurse said that she would give me one more treatment round and see how it goes.
So overall, it was positive feedback - we are defiantely happy with the tentative news. This round of chemo will be today, tomorrow, Saturday, and the shot on Sunday.
We meet with the radiation doctor on Thr. July 16th, I'll let you know how it goes!
PS: it is painful to type with an IV in your hand - ouch!
Sunday, June 7, 2009
Chemo Round 2
Forgive me that my brain power isn't what it should be; My attempt at this update is because I appreciate your caring and checking in on us.
Unlike last week -Thursday was a go! My white count was back to normal, 3 sticks and my IV was in (not bad), it was looking like it would be smooth sailing. After a long day of being at BI from 10-6pm, a few games of Uno and watching"Paul Blart Mall Cop" we were finally on our way home.
Friday at 2 am I woke up with a killer migraine and began throwing up. (pretty huh?). Which lead to another long day at BI from 9-5p. My stomach was like the paddles of a pin ball machine; if anything, even water hit those paddles up it came instantaneously... (which lead to the phrase "Colleen we might have to admit you"; this we did not let happen) this wonderful analogy lasted until around noon on Saturday, where we were back at BI from 10-5p again. After more IV nausea meds & chemo I was finally able to stomach ice chips, a saltine cracker, and eventually water, even my more daring approach around 6p, soup.
So now it is Sunday. I'm still feeling miserable and being very careful of what I attempt to eat or drink, sleeping a lot and the weekend is over. Hopefully all of the symptoms get better by day.
I will be going in for the very important CT Scan on Saturday June 27; however, we will not be getting the results until Thurs. 7/2.
Our goal for the results: The mass in the thymus gets smaller, but the liver masses do Not change at all!! When we go in on 7/2 we will find out the results and possibly continue the next round of chemo that day.
Thank you for thinking of us!
Unlike last week -Thursday was a go! My white count was back to normal, 3 sticks and my IV was in (not bad), it was looking like it would be smooth sailing. After a long day of being at BI from 10-6pm, a few games of Uno and watching"Paul Blart Mall Cop" we were finally on our way home.
Friday at 2 am I woke up with a killer migraine and began throwing up. (pretty huh?). Which lead to another long day at BI from 9-5p. My stomach was like the paddles of a pin ball machine; if anything, even water hit those paddles up it came instantaneously... (which lead to the phrase "Colleen we might have to admit you"; this we did not let happen) this wonderful analogy lasted until around noon on Saturday, where we were back at BI from 10-5p again. After more IV nausea meds & chemo I was finally able to stomach ice chips, a saltine cracker, and eventually water, even my more daring approach around 6p, soup.
So now it is Sunday. I'm still feeling miserable and being very careful of what I attempt to eat or drink, sleeping a lot and the weekend is over. Hopefully all of the symptoms get better by day.
I will be going in for the very important CT Scan on Saturday June 27; however, we will not be getting the results until Thurs. 7/2.
Our goal for the results: The mass in the thymus gets smaller, but the liver masses do Not change at all!! When we go in on 7/2 we will find out the results and possibly continue the next round of chemo that day.
Thank you for thinking of us!
Saturday, May 30, 2009
Hair-less
I'm bald. Keep me away from mirrors!
We got up at 6:30am on a Saturday because I couldn't take it anymore! There were too many bald spots to cover with the thin strands of unruly hair that were left, my head was sensitive to touch and hair was (is) EVERYWHERE! Everywhere meaning on and in my clothes, on every piece of furniture we have, the floors and yes even a few of the ceilings - ridiculous! It was time.
So after my very supportive and patient husband trimmed and then shaved my head we began cleaning the mess my former accessory had caused. It will take awhile, but eventually our house will again be back to its normal, clean self. I'm not sure why I wasn't born wealthy, but if I was we would definitely have a professional cleaner!!
We got up at 6:30am on a Saturday because I couldn't take it anymore! There were too many bald spots to cover with the thin strands of unruly hair that were left, my head was sensitive to touch and hair was (is) EVERYWHERE! Everywhere meaning on and in my clothes, on every piece of furniture we have, the floors and yes even a few of the ceilings - ridiculous! It was time.
So after my very supportive and patient husband trimmed and then shaved my head we began cleaning the mess my former accessory had caused. It will take awhile, but eventually our house will again be back to its normal, clean self. I'm not sure why I wasn't born wealthy, but if I was we would definitely have a professional cleaner!!
Friday, May 29, 2009
Chemo Postponed
So after a 2 hour car ride to BI, waiting, having blood drawn, waiting, having my vitals taken, waiting, being brought back to a room, waited for the doctor - I am then told that I can't have chemo this week!! Frustrating!
Normally I would try to talk my doctors into doing it anyways; but my white count was only 800 and it needs to be 1500 in order to administer chemo. Which is too far off even for me to argue with.
White count = the number of infection fighting cells you have. Chemo knocks this number down making your immune system very weak, they would have thought my count would be back to a higher number by this time; they were wrong.
So now we wait. Dr. Huberman said that there's nothing I can do to bring the count up, that it should go up on its own and be fine for next week. We will re-try round 2 of chemo again next week (Thur. (6/4), Fri (6/5), Sat (6/6)).
On a different updating note; for those of you who haven't seen my ever changing hairstyle in the past week, it has become very thin and will be completely gone within the week I'm sure.
Normally I would try to talk my doctors into doing it anyways; but my white count was only 800 and it needs to be 1500 in order to administer chemo. Which is too far off even for me to argue with.
White count = the number of infection fighting cells you have. Chemo knocks this number down making your immune system very weak, they would have thought my count would be back to a higher number by this time; they were wrong.
So now we wait. Dr. Huberman said that there's nothing I can do to bring the count up, that it should go up on its own and be fine for next week. We will re-try round 2 of chemo again next week (Thur. (6/4), Fri (6/5), Sat (6/6)).
On a different updating note; for those of you who haven't seen my ever changing hairstyle in the past week, it has become very thin and will be completely gone within the week I'm sure.
Friday, May 22, 2009
Hair
Just a mini update.
I went and got a super cute hair cut last night; however, it's not going very last long because my hair has started to fall out in clumps. :o(
I'm very curious to see what it's going to look like when it grows back this time... I'm afraid I have a long time to wait for that though.
Chemo Round 2 this coming Thursday (5/28). ding, ding, ding!
Happy Memorial Day Weekend!!
I went and got a super cute hair cut last night; however, it's not going very last long because my hair has started to fall out in clumps. :o(
I'm very curious to see what it's going to look like when it grows back this time... I'm afraid I have a long time to wait for that though.
Chemo Round 2 this coming Thursday (5/28). ding, ding, ding!
Happy Memorial Day Weekend!!
Thursday, May 14, 2009
One Week Post Cycle #1
Well Hello Everyone,
Today is Thursday, one week after my first day of chemo; this is also the first day that I feel human again! My stomach is still wishy washy, but overall I'm feeling 100% better!
I've been miserable, grumpy, very sick, exhausted and haven't really talked much to anyone (warning: this might be a reoccurring thing with every cycle). Thank you everyone for hanging in there with me though! Even on my most miserable days there was always someone that sent along an encouraging word and let me tell you, it makes a world of difference! Thank You!
I had a follow-up this morning with the doctors. Although it was a bit longer than anticipated (!!!) everything came back good! :o) My mom took me to this appointment where she got to meet my doctors/nurses and see where I get treated, which was nice. We always have an adventure! I'm not so sure how we got "misguided" after the appointment and ended up at the 99's and then the nail salon for pedicures, but it was WELL worth it!!! :o)
The next time I have to go in is for day #1 cycle #2, May 28th. It will be the same regiment as last time Thur (6 hrs, Cisplatin/vp-16), Fri (2 hrs, vp-16), Sat (2 hrs vp-16). Hopefully this time the IV placement will go smoother!
Today is Thursday, one week after my first day of chemo; this is also the first day that I feel human again! My stomach is still wishy washy, but overall I'm feeling 100% better!
I've been miserable, grumpy, very sick, exhausted and haven't really talked much to anyone (warning: this might be a reoccurring thing with every cycle). Thank you everyone for hanging in there with me though! Even on my most miserable days there was always someone that sent along an encouraging word and let me tell you, it makes a world of difference! Thank You!
I had a follow-up this morning with the doctors. Although it was a bit longer than anticipated (!!!) everything came back good! :o) My mom took me to this appointment where she got to meet my doctors/nurses and see where I get treated, which was nice. We always have an adventure! I'm not so sure how we got "misguided" after the appointment and ended up at the 99's and then the nail salon for pedicures, but it was WELL worth it!!! :o)
The next time I have to go in is for day #1 cycle #2, May 28th. It will be the same regiment as last time Thur (6 hrs, Cisplatin/vp-16), Fri (2 hrs, vp-16), Sat (2 hrs vp-16). Hopefully this time the IV placement will go smoother!
Saturday, May 9, 2009
Chemo Cycle #1
Cycle one started Thursday morning, after the 2 hour ride in we got there promptly on time at 8:45am. Checked in at the desk, had my vitals done, drew blood, met with my oncologists and then to Nurse Linda we went. So if I gave you all a quiz before I even began this I bet you could guess what comes next.... if you answered, A. trying to find a vein to put the IV in, you'd be correct! ding! ding! ding! Now I won't say that it doesn't bother me to be stabbed 6 times and not yet place the IV, I've become used to this, I do however get very angry at the mention of sending me home and having to wait for another day because 3 nurses can't find a vein to put the IV in. Well one last stick and finally we have luck (lucky for them!) Okay, so now we're on a roll. Start the saline, give me anti-nausea meds.. then finally the chemo. The process of this first day went from 8:45am-6:00pm. John and I spent our time playing some monopoly (until the sleeping aid he convinced (not true) the nurse to give me cause me to forfeit - I had all the transportation properties too, I was clearly winning!). So after me passing out for a while we had a little lunch, and then watched Baby Mama. Finally time for all of the discharge directions and we were off. Finally home. Surprisingly this day went better than that night and following days.
I woke up Friday morning nauseous, tried to eat something and take my meds, that didn't go all so well. After throwing up, I called the nurses at BI, got a new attack plan and went in early. They gave me more IV anti nausea meds, the VP-16 chemo and more saline. That trip lasted from 11-4ish. I slept a little better last night, but only to wake up nauseous again, no throwing up yet though. Today was the final treatment for this cycle. We arrived at BI at 11am and left around 3pm. My goal this time was to sleep as much as possible.
So to sum up this experience, my body is pissed that I'm taking back control; but taking back control I'm going to do.
I'm taking it a little (a lot) slower these days; so bear with me when it comes to phone calls or blog entries, but I'll do what I can. Your messages of support keep me kicking!
We have to go back to BI on Thursday for follow up blood work and to "check in", but chemo cycle #2 doesn't start until 5/28.
I woke up Friday morning nauseous, tried to eat something and take my meds, that didn't go all so well. After throwing up, I called the nurses at BI, got a new attack plan and went in early. They gave me more IV anti nausea meds, the VP-16 chemo and more saline. That trip lasted from 11-4ish. I slept a little better last night, but only to wake up nauseous again, no throwing up yet though. Today was the final treatment for this cycle. We arrived at BI at 11am and left around 3pm. My goal this time was to sleep as much as possible.
So to sum up this experience, my body is pissed that I'm taking back control; but taking back control I'm going to do.
I'm taking it a little (a lot) slower these days; so bear with me when it comes to phone calls or blog entries, but I'll do what I can. Your messages of support keep me kicking!
We have to go back to BI on Thursday for follow up blood work and to "check in", but chemo cycle #2 doesn't start until 5/28.
Friday, April 24, 2009
Treatment Plan
Yesterdays appointment, Finally, gave us a plan of action! It has been decided that at this time it is not worth while for me to receive radiation. The team of doctors are Very suspicious that the spots in the liver are cancer and do not want me to under-go radiation unnecessarily, so Chemotherapy it is.
Day 1 of chemo will be on Thursday May 7th @ 8:45am. This first day is estimated to last 5-6 hours and will be the concoction of Cisplatin and VP-16.
8:45am-Blood Work
9:30am-Dr. Huberman
10:00am- Chemo begins
Day 2 of chemo will be on Friday, May 8th @ 4pm, and is estimated at 1.5 to 2 hrs of VP-16 only.
Day 3 of chemo will be on Saturday, May 9th @ 9am and again will be about 1.5-2hrs of VP-16.
Approximately two weeks after the treatment I will be brought in for blood work, to make sure everything looks normal. ie: white blood cells and kidney functions
Following the blood work I will do another round of chemo beginning on 5/28 (as of now that is the date) that will consist of the same treatment above (assuming I handled that concoction well the first time)
For all of you googlers out there:
The cocktail (nothing like a margarita unfortunately)
I will be receiving an IV cocktail of Cisplatin (aka: Platinol) and Etoposide (VP-16).
Although the odds of the cancer having spread are very high, we chose the more aggressive of the chemo drugs nonetheless. I don't want some pansy drug that's going to lightly touch on any cancer in my body, I want a drug that will kick the crap out of it even if that means I'll be throwing up a bit more and some additional side effects (we'll chat later about this). I do have various prescriptions for anti-nausea, steroids, and anti-anxiety to counter act the craziness that the steroids will cause.
The Scripts:
- Ondansetron (zofran) - anti-nausea that works on a neurological level, but will only work for 3 consecutive days before the brain catches on to its trickiness. This is to be taken only if the pre-vomitting meds don't work.
- Prochlorperazine Edisylate (compazine) - anti-nausea to take at first onset of queasiness, 4-6 hrs as needed
- Aprepitant (Emend) - Anti-nausea to be taken the night of chemo treatment, a larger dose the first day, and smaller doses days 2 and 3
-Dexamethasone - Steroids, to be taken twice a day for 4 days along with the Emend (see above)
-Lorazepam (ativan) - a calming agent, mostly to counteract the steroids, not a sleeping aid, but will help me relax and might make me drowsy.
-Hair Prosthesis (wig) - should I go blond?!? (probably not, but you can bet I'll try on every color just for the fun of it)
Side Effects from chemo-cocktail:
-Hair loss (again!), will begin 14-21 days after first day of treatment. Hair will begin to grow back a few months after treatment has stopped. (this will not go as well for me, before my face was way thinner, i could pull off the short hair thing!)
-Nausea
-Fatigue
-Low white blood count (will be tested), causes low immunity. If I get a fever over 100 degrees, cough, chills, bleeding, bruising. I need to go in for antibiotics
-Mouth Sores, treatment of home made rinse. Call doc if they become severe.
-Redness in and around mouth (boy this should be pretty), yeah no treatment for this
-Possible damage to nerves (numbness, tingling, weakness, pain, hearing loss)
- Possible Kidney damage (will check levels via blood count)
-Possible allergic reaction to the chemo (then we will have to change the components of the cocktail)
-*other side effects may occur, call your doctor, blah blah blah...*
Do you all feel totally in tune with my life and my body now? haha.
Above is a whole lot of technical information. Probably more than anyone needs to know, but in case you did there it is; meaning that I don't have to go through it all verbally (hooray for the Internet!).
Assuming (hoping) nothing pops up before then, I won't be posting for a few weeks; seeing this is for cancer updates only, if you want to know about the rest of my (not so) adventurous life, you're just going to have to actually talk to or email me. :o)
I tried to figure out how to trigger an email to my "followers" (kinda creepy title) every time I post, but I don't think it's an option - sorry.
Day 1 of chemo will be on Thursday May 7th @ 8:45am. This first day is estimated to last 5-6 hours and will be the concoction of Cisplatin and VP-16.
8:45am-Blood Work
9:30am-Dr. Huberman
10:00am- Chemo begins
Day 2 of chemo will be on Friday, May 8th @ 4pm, and is estimated at 1.5 to 2 hrs of VP-16 only.
Day 3 of chemo will be on Saturday, May 9th @ 9am and again will be about 1.5-2hrs of VP-16.
-wash, rinse and repeat-
Following the blood work I will do another round of chemo beginning on 5/28 (as of now that is the date) that will consist of the same treatment above (assuming I handled that concoction well the first time)
For all of you googlers out there:
The cocktail (nothing like a margarita unfortunately)
I will be receiving an IV cocktail of Cisplatin (aka: Platinol) and Etoposide (VP-16).
Although the odds of the cancer having spread are very high, we chose the more aggressive of the chemo drugs nonetheless. I don't want some pansy drug that's going to lightly touch on any cancer in my body, I want a drug that will kick the crap out of it even if that means I'll be throwing up a bit more and some additional side effects (we'll chat later about this). I do have various prescriptions for anti-nausea, steroids, and anti-anxiety to counter act the craziness that the steroids will cause.
The Scripts:
- Ondansetron (zofran) - anti-nausea that works on a neurological level, but will only work for 3 consecutive days before the brain catches on to its trickiness. This is to be taken only if the pre-vomitting meds don't work.
- Prochlorperazine Edisylate (compazine) - anti-nausea to take at first onset of queasiness, 4-6 hrs as needed
- Aprepitant (Emend) - Anti-nausea to be taken the night of chemo treatment, a larger dose the first day, and smaller doses days 2 and 3
-Dexamethasone - Steroids, to be taken twice a day for 4 days along with the Emend (see above)
-Lorazepam (ativan) - a calming agent, mostly to counteract the steroids, not a sleeping aid, but will help me relax and might make me drowsy.
-Hair Prosthesis (wig) - should I go blond?!? (probably not, but you can bet I'll try on every color just for the fun of it)
Side Effects from chemo-cocktail:
-Hair loss (again!), will begin 14-21 days after first day of treatment. Hair will begin to grow back a few months after treatment has stopped. (this will not go as well for me, before my face was way thinner, i could pull off the short hair thing!)
-Nausea
-Fatigue
-Low white blood count (will be tested), causes low immunity. If I get a fever over 100 degrees, cough, chills, bleeding, bruising. I need to go in for antibiotics
-Mouth Sores, treatment of home made rinse. Call doc if they become severe.
-Redness in and around mouth (boy this should be pretty), yeah no treatment for this
-Possible damage to nerves (numbness, tingling, weakness, pain, hearing loss)
- Possible Kidney damage (will check levels via blood count)
-Possible allergic reaction to the chemo (then we will have to change the components of the cocktail)
-*other side effects may occur, call your doctor, blah blah blah...*
Do you all feel totally in tune with my life and my body now? haha.
Above is a whole lot of technical information. Probably more than anyone needs to know, but in case you did there it is; meaning that I don't have to go through it all verbally (hooray for the Internet!).
Assuming (hoping) nothing pops up before then, I won't be posting for a few weeks; seeing this is for cancer updates only, if you want to know about the rest of my (not so) adventurous life, you're just going to have to actually talk to or email me. :o)
I tried to figure out how to trigger an email to my "followers" (kinda creepy title) every time I post, but I don't think it's an option - sorry.
Thursday, April 16, 2009
Biopsy Results
INCONCLUSIVE. Unbelievable, stab me, suck out my liver cells 7 times and don't get an answer. You would think I'd be upset - nope! Not being able to say that I definately have cancer in my liver is okay with me... I am clean by reasonable doubt, hey if it's good enough for criminals, it's good enough for me.
Okay, so the plan. A lot of various groups of doctors will be sitting around talking about me for the next week, as they have been for the past month. They will each give their recommendations to my oncologist who will propose and advise me on my options; some of which we went over today.
Next Appointment, when the treatment decision should be made: Thursday 4/23 @ 4:30p.
Okay, so the plan. A lot of various groups of doctors will be sitting around talking about me for the next week, as they have been for the past month. They will each give their recommendations to my oncologist who will propose and advise me on my options; some of which we went over today.
Next Appointment, when the treatment decision should be made: Thursday 4/23 @ 4:30p.
Thursday, April 9, 2009
Biopsy Result Date
Thursday April 16th:
2:00 Dr. Michaud (added on 4/14, this can't be good)
2:30 Dr. Huberman
2:00 Dr. Michaud (added on 4/14, this can't be good)
2:30 Dr. Huberman
Liver Biopsy Day
Waking up bright and early to get to BI by 9am, fun. It was a Long Day (I say this a lot huh??), maybe all of this will redefine the word long for me... We get there at 8:45ish, and I must give John credit for knowing which building, I almost took us in the wrong one. I say my hello's to all of the staff I know so well, IV in the first shot!! I didn't even mind the extra sensitivity of the hand; only being stabbed once is a blessing. So I'm all prepped to go by 9:10ish, but am told that I have to wait until 10:30a, so at 11am someone comes to get me. I make it up to radiology and am greeted by one of the tech's she says "are you comfortable in the stretcher" my facial expression was I'm sure more entertaining than my answer of, as comfortable as I can be.. however; to throw me off even more she says, good because we have an emergency coming in and we have to bump you. UGH! So Sarina (the best) goes to find John and bring him up. and we wait. finally 2pm I go in, they set me up, the doc comes in congratulates me on our wedding (I know him from before, I know most people from "before") and then we begin.
They scan my body using cat/scan and ultra sound, to find the lesions on my liver, this takes a while.. when they're pretty sure they slice my skin (that they've already colored on making their marks), and put in a needle cathater, and scan again.. too bad they didn't position this right the first time, so they move the cathater and do that procedure twice more. Okay time to get the "stuff". A Very long needle is placed in the needle cathater and sucks up some cells when clicked. Then the staff hides in the other room, checks it out, scans me again and repeats this several times (7?).
Meanwhile Dotty (super nice nurse providing me with "the good stuff" to keep me pain free but responsive) and I chat away about the Red Sox, Hawaii and other medical stuff. Done!
Down to recovery I go, feeling very nauseous and strange, I try to nap.. Finally 7pm-ish rolls around and we get to go home.
While in recovery I called to schedule the follow up. Unfortunately (our luck of course) we go in to find out the results one week from today, April 16th, hubby's Birthday. :O(
Finally
They scan my body using cat/scan and ultra sound, to find the lesions on my liver, this takes a while.. when they're pretty sure they slice my skin (that they've already colored on making their marks), and put in a needle cathater, and scan again.. too bad they didn't position this right the first time, so they move the cathater and do that procedure twice more. Okay time to get the "stuff". A Very long needle is placed in the needle cathater and sucks up some cells when clicked. Then the staff hides in the other room, checks it out, scans me again and repeats this several times (7?).
Meanwhile Dotty (super nice nurse providing me with "the good stuff" to keep me pain free but responsive) and I chat away about the Red Sox, Hawaii and other medical stuff. Done!
Down to recovery I go, feeling very nauseous and strange, I try to nap.. Finally 7pm-ish rolls around and we get to go home.
While in recovery I called to schedule the follow up. Unfortunately (our luck of course) we go in to find out the results one week from today, April 16th, hubby's Birthday. :O(
Finally
Wednesday, April 8, 2009
Liver Biopsy
Liver Biopsy is scheduled for tomorrow, Thursday.
Follow up will be in about a week (still tba), which is when we will get the results.
Follow up will be in about a week (still tba), which is when we will get the results.
Tuesday, April 7, 2009
The Two Day BI Trip
After work yesterday (Mon 4/6/09 (happy bday scott & dickie)) we headed to the Park Plaza in Boston, the best part of our 2 days. After checking in we headed to our room on the 12th floor (did you know the hotel skips the number 13 when counting their floors?) After getting settled and starving we headed to BI. An empty waiting room - what a good sign! It would have been even better if they could find a vein; but nope, we had to wait for an IV nurse to show up (after two missed stabbings). Well 15/20 minutes of hot packs on my arms must do wonders, I might have looked like I had a sunburn but she got the vein. Okay now it's into the small cylinder for 40 minutes. Ear Plugs in (check), Breathing Strap On (check), Lead Weights (check), Emergency Bulb in case I need help (check). 40 minutes later, done - time to eat!
We headed back to the Park Plaza where we went to M.J. O'Connors, an Irish Pub, good food, (they also own The Harp and Ned Divines). Better than dinner was Finale, a dessert place we had seen on Phantom Gourmet - AMAZINGLY DELICIOUS!!! (highly recommended). Following dessert = sleep!
Good Morning! A nice stroll around Boston, Au Bon Pain coffee and croissant for breakfast (ooo la la), then back to the hospitals. Breathing tests (they make me drool, but quick and painless), lunch (sbarro, great calzone!), then the important stuff, the answers - or so we thought...
So last nights liver MRI showed "suspicious spots on my liver" (didn't we already know this?). The point being that they need to be checked out. I will be going in for a liver biopsy (within the week, tba); however I won't receive results from that until a week following the biopsy (also tba). There was no need to meet with the radiology specialist seeing that the determination of the biopsy might change my treatment in that they will not use radiation.
I have gone back and forth as how much information to post. I came to the conclusion that the reason the doctors went through everything with me is so that I'm not blind-sided come the results of the biopsy, so you all should be given the same respect.
They have reason to believe that the spots on my liver are cancer spots, however they could just be inflamation (please keep this in mind), which is why the biopsy is so neccessary. Unfortunately if I have thymic carcinoma cancer also in my liver then it is not curable and is considered to be on the same line as stage 4 lung cancer. If it is cancer, my treatment will be chemo that will give me the best quality of life with the benefit of extending my life as long as possible. They estimate that I would have about a year left to live. If they can't prove cancer, then they will go ahead and do the previous plan and treat only the thymic carcinomas (two) on my thymus.
I'm sorry to all you who have to find out this information in such an impersonal way; but to reiterate this information to everyone is very difficult for John and I. Our plan, please take our lead is not to jump to conclusions... we do not know anything until we receive the results of the biopsy.. and as always, I will let you know when I know.
We headed back to the Park Plaza where we went to M.J. O'Connors, an Irish Pub, good food, (they also own The Harp and Ned Divines). Better than dinner was Finale, a dessert place we had seen on Phantom Gourmet - AMAZINGLY DELICIOUS!!! (highly recommended). Following dessert = sleep!
Good Morning! A nice stroll around Boston, Au Bon Pain coffee and croissant for breakfast (ooo la la), then back to the hospitals. Breathing tests (they make me drool, but quick and painless), lunch (sbarro, great calzone!), then the important stuff, the answers - or so we thought...
So last nights liver MRI showed "suspicious spots on my liver" (didn't we already know this?). The point being that they need to be checked out. I will be going in for a liver biopsy (within the week, tba); however I won't receive results from that until a week following the biopsy (also tba). There was no need to meet with the radiology specialist seeing that the determination of the biopsy might change my treatment in that they will not use radiation.
I have gone back and forth as how much information to post. I came to the conclusion that the reason the doctors went through everything with me is so that I'm not blind-sided come the results of the biopsy, so you all should be given the same respect.
They have reason to believe that the spots on my liver are cancer spots, however they could just be inflamation (please keep this in mind), which is why the biopsy is so neccessary. Unfortunately if I have thymic carcinoma cancer also in my liver then it is not curable and is considered to be on the same line as stage 4 lung cancer. If it is cancer, my treatment will be chemo that will give me the best quality of life with the benefit of extending my life as long as possible. They estimate that I would have about a year left to live. If they can't prove cancer, then they will go ahead and do the previous plan and treat only the thymic carcinomas (two) on my thymus.
I'm sorry to all you who have to find out this information in such an impersonal way; but to reiterate this information to everyone is very difficult for John and I. Our plan, please take our lead is not to jump to conclusions... we do not know anything until we receive the results of the biopsy.. and as always, I will let you know when I know.
Thursday, April 2, 2009
Unexpected call Post PET/Scan
I received a call from my doctor's office today requesting that I go in for a liver MRI. They want it done before my Tuesday appointments with the doctors which is when I will receive the results of the testing. The reasoning I was given for this was that "the PET/Scan showed an intense area on my liver where my gallbladder used to be". Intense huh? interesting choice of words... So of all days (nights acutally) we have to go on Monday night, the Red Sox home opener, I'm sure that traffic will be terrific!
Tuesday, March 31, 2009
Very Long Day
Today was VERY long! We left our house at 6:30am, it took an hour and a half to get to the already crowded parking garage (how do people do this to get to work every day!).
After trecking up to the third floor of the east campus, greeted with a clipboard of the same paperwork that I've filled out a million times before we sat in the waiting room. Shortly after, the tech brought out the liquid highlighter for me to drink (2 containers - yuck!) After choking that down for an hour, I was taken back to a very small room to find my single vein for the IV. Success! One shot and the IV was in!! So the tech then says that he's going to shoot "radioactive fluid" into the IV and I will have to sit in this little room for an hour and let it "flow" before doing the scan. He then comes back with this massive lead suringe filled with the potent liquid that would soon be lighting my insides up. After injecting it he shuts the door and so I wait, feeling like my own personal light bulb.
So I play with all of the buttons on the wall - the radio, hooray! So as I recline the lounge chair and flip through all of the (male gender bias) magazines, I wait. Finally an hour passes, after changing into the scratchy johnny we went into the PET/Scan room. This was a simple test for all of the preparations! No holding your breath like the MRIs or CT/Scans, just lay there... the instructions were "fall asleep if you'd like" (easier said than done). So after who knows how long, we'll guess 45 minutes or so I was done - terrific! Now comes time to talk this sweet tech into leaving my IV in so that I wouldn't have to be stabbed again later, he already took my one vein, I wasn't sure they'd find another. He agreed, amazing!
So John Michael and I were off, time to eat! We walked the Fenway, up and down the roads waiting for someplace to open for lunch, alas, Longhorn. After eating we went next door to the movie theater to catch knowing (Nicholas Cage), CREEPY! however, perfect timing for the block of time we had in between the exams. Okay so the world ends (in the movie) and then we head back to real life.
Now we're headed over to West Campus for the head MRI, so after going to the MRI Suite (nothing like a hotel suite), I was told that I was scheduled in the "mobile MRI room". Okay, so then we're on the search yet again. Finally we find this tiny room, check in (more of the same paper work), reput on a johnny and then wait. After 10 minutes or so a nurse takes me up a ramp, out the door to a tunnel of sorts, then into a handicap lift into the sliding door of a truck, okay so when they say mobile, they mean mobile! Okay this is new, I'm in a truck with an MRI machine, excited that I already have my IV we start right away. After plugging my ears and strapping on a helmet with a tiny mirror so that I could see only my own eyes they slide me in the cylinder. The noise begins, not able to move for another 45 minutes; but then, it's over!!
Time to go home, or sit in Boston traffic and eventually make it home.
Over all a very successful day. Now we wait a week before we know the results of todays adventures.
After trecking up to the third floor of the east campus, greeted with a clipboard of the same paperwork that I've filled out a million times before we sat in the waiting room. Shortly after, the tech brought out the liquid highlighter for me to drink (2 containers - yuck!) After choking that down for an hour, I was taken back to a very small room to find my single vein for the IV. Success! One shot and the IV was in!! So the tech then says that he's going to shoot "radioactive fluid" into the IV and I will have to sit in this little room for an hour and let it "flow" before doing the scan. He then comes back with this massive lead suringe filled with the potent liquid that would soon be lighting my insides up. After injecting it he shuts the door and so I wait, feeling like my own personal light bulb.
So I play with all of the buttons on the wall - the radio, hooray! So as I recline the lounge chair and flip through all of the (male gender bias) magazines, I wait. Finally an hour passes, after changing into the scratchy johnny we went into the PET/Scan room. This was a simple test for all of the preparations! No holding your breath like the MRIs or CT/Scans, just lay there... the instructions were "fall asleep if you'd like" (easier said than done). So after who knows how long, we'll guess 45 minutes or so I was done - terrific! Now comes time to talk this sweet tech into leaving my IV in so that I wouldn't have to be stabbed again later, he already took my one vein, I wasn't sure they'd find another. He agreed, amazing!
So John Michael and I were off, time to eat! We walked the Fenway, up and down the roads waiting for someplace to open for lunch, alas, Longhorn. After eating we went next door to the movie theater to catch knowing (Nicholas Cage), CREEPY! however, perfect timing for the block of time we had in between the exams. Okay so the world ends (in the movie) and then we head back to real life.
Now we're headed over to West Campus for the head MRI, so after going to the MRI Suite (nothing like a hotel suite), I was told that I was scheduled in the "mobile MRI room". Okay, so then we're on the search yet again. Finally we find this tiny room, check in (more of the same paper work), reput on a johnny and then wait. After 10 minutes or so a nurse takes me up a ramp, out the door to a tunnel of sorts, then into a handicap lift into the sliding door of a truck, okay so when they say mobile, they mean mobile! Okay this is new, I'm in a truck with an MRI machine, excited that I already have my IV we start right away. After plugging my ears and strapping on a helmet with a tiny mirror so that I could see only my own eyes they slide me in the cylinder. The noise begins, not able to move for another 45 minutes; but then, it's over!!
Time to go home, or sit in Boston traffic and eventually make it home.
Over all a very successful day. Now we wait a week before we know the results of todays adventures.
Monday, March 30, 2009
PET/Scan Prep
After a weekend of doctor appointments that keep getting randomly thrown at me, it's the day before the PET/Scan and Head MRI. It's nice when your mom tells you: "people are going to think you're a junky with all those bruises on your arms". It seems as though my veins are better hiders than camelions when it comes to drawing blood or putting in an IV. The nurse gave me this crazy list of preparations for the pet/scan which starts tonight at dinner; it requires me to eat only fried protein. No carbs, veggies, fruit or sugar... so i guess I'll be having a couple boneless, skinless plain chicken strips fried in a pan with a side of plain pan fried chicken - yum! After that, I get to fast until after the three and a half hour process. I'm not allowed gum, cough drops, or anything to get the fried chicken flavor out of my mouth... I'll have the cleanest teeth around by tomorrow, because toothpaste will be my savior!
On a good note for this past weekend the movie: I love you man is hysterical!
On a good note for this past weekend the movie: I love you man is hysterical!
Saturday, March 28, 2009
Testing
Saturday 3/28/09 11:00am Echo Cardiogram
Tuesday 3/31/09 7:50am PET/Scan (3.5 hour process)
Tuesday 3/31/09 3:55pm Head MRI
Monday 4/6/09 7:55pm Liver MRI
Tuesday 4/7/09 1:00pm PFT/MIP/MEP (breathing tests)
Tuesday 4/7/09 2:30pm Dr. Michaud (pulmonologist)
Tuesday 4/7/09 3:00pm Dr. Huberman (head of surgery)
Tuesday 4/7/09 4:00pm Dr. Nedea (?)
Tuesday 3/31/09 7:50am PET/Scan (3.5 hour process)
Tuesday 3/31/09 3:55pm Head MRI
Monday 4/6/09 7:55pm Liver MRI
Tuesday 4/7/09 1:00pm PFT/MIP/MEP (breathing tests)
Tuesday 4/7/09 2:30pm Dr. Michaud (pulmonologist)
Tuesday 4/7/09 3:00pm Dr. Huberman (head of surgery)
Tuesday 4/7/09 4:00pm Dr. Nedea (?)
When we found Out
March 26th, the day of the follow-up... I met with the specialist and he told me that the results of the tests proved it to be cancer and that everyone was surprised by this - mostly me. So they gave us a general over view of what was going to happen... we took in a lot of information but they tried not to go into too much detail. So I have a ton of appointments schedule. It seems as though they don't think the shortness of breath has to do with the cancer (it might but they're not sure).. so the plan is: testing my brain and body to see if there are any masses anywhere else, do a series of breathing tests, and other random testing. Then they are going to put me through radiation and chemo (at the same time), which he thinks will be 5 days a week for a month and a half, but I haven't sat down with those doctors yet and they won't know for sure until after all the testing.. so after the radiation/chemo (which they are going to try to shrink the mass as much as possible) they are going to do surgery. This surgery is very risky. I have a thymic carcinoma (thynoma), which is behind my breast bone in between the heart and lung ontop of a major blood vessel (vena cava). Another possible complication (that they won't know until they get in there) is if the mass has grown into the vena cava; if it has then they will have to reconstruct my veins inorder to take out the whole mass. Everyone is trying to stay optimistic, which is all we can do right now.
What brought me to the Doctors
Okay i'm just going to jump in: Evidentally this mass appeared in one of my ct-scans back in July 2006 (when I was very sick, icu, etc). They went in and biopsied it; however when they did so they punctured my lung and to boot the biopsy results were inconclusive. So because all of the symptoms lead them to believe that it was a hematoma (dried blood on top of my vein), they figured that it would "wash away" and seeing I was too weak to go back in and test it again they left it alone and just tried to keep me alive. Well about a month or so ago I started getting sharp pains in the right side of my chest and was having a very difficult time breathing, so I went in and saw my doc (primary), she sent me for a ct-scan and they found the mass (the first time I've ever heard that I had it), my primary referred me to some specialists, so when I went to B.I. they told me that they knew this mass was there and it hasn't changed size (or much at all), which is wierd and didn't suggest cancer or a hematoma. None of my symptoms matched up to any diagnosis. So then I had to go through different tests, an MRI, a biopsy and breathing tests, with a follow-up on March 26th for results.
Subscribe to:
Posts (Atom)