I hope you all like the new design, it's a bit more cheerful!
Yesterday afternoon was a very busy one. John and I parked on West campus of B.I., walked over to East campus to pick up copies of my scans, walked them over to Dana Farber, then walked back to West campus to meet with Dr. Critchlow; phew, we made it just in time!
It was a quick appointment. We've been speaking of the pros and cons of ports, how they work, and what it consists of for over a year now; so needless to say we were already informed of the details. Yesterday's appointment was to go over exactly where the port would be placed. A femoral central line will be put in, which means that unlike normal ports mine will be connected to a vein in my pelvis instead of in my chest. It isn't that this type isn't heard of, it's just not the number one choice when it comes to placing a port; however, in my case, it is our best option. A port is a round disk, the size of a quarter, that is placed under the skin and has a tube that connects to a major blood vessel in the body. This will allow venous access without putting in an IV. The "super port" that will be placed can be used for everything: blood draws, Scan dye, and chemo. I know what you're thinking, why didn't you do this over a year ago... well, I am a high risk for both infection and blood clots developing from this surgery; but no worries, I'm convinced that by sticking it out (dorky pun, I know, I just couldn't resist...) all of this time with the IVs, that everything will go as smoothly as can be.
Upcoming Appointments:
Monday, August 2nd: Port Day Surgery
Friday, August 6th: Chemo
Tuesday, July 27, 2010
Wednesday, July 21, 2010
A Faux Healthy Week
This is definately not a good faux, as in faux fur or crocodile accessories; this is annoyingly still being exhausted and sick after I've passed the one week mark after chemo. I suppose defining the word "sick" is necessary in this case. I am not sick because of the chemo; but I'm still trying to fight off the nasty sinus, and congestion thing I've had since before chemo, and although it seems to be getting better, the results of my blood work caused my doctors to put me on antibiotics anyways. I am on a Z-Pack for five days, beginning today.
The Dana Farber consult was uneventful. I failed to get the doctor copies of my scans so she hasn't been able to compare them or make her own accessment, I'm bringing them over to her on Monday. Dr. Gandhi did however have the results of the biopsy that DF had done concerning the genetic possibility of my thymic carcinoma; it was negative. The reason for the biospy was because there is a treatment out there that has shown positive results in people who have been positive for this crossing of genes; the good news is that it is now showing positive results in people who do not have this proven trait as well, meaning, it does still remain a possible treatment if the chemo I'm on stops working.
Thank you so much for everybody who became followers and made a comment on not only the last, but any of the postings! They really lift my spirits, not to mention that it's an odd concept writing and not knowing who is reading it, so keep the comments coming!
Upcoming Appts:
Monday, July 26: Dr. Critchlow appointment
Monday, August 2: Port Day Surgery
Friday, August 6: Chemo
The Dana Farber consult was uneventful. I failed to get the doctor copies of my scans so she hasn't been able to compare them or make her own accessment, I'm bringing them over to her on Monday. Dr. Gandhi did however have the results of the biopsy that DF had done concerning the genetic possibility of my thymic carcinoma; it was negative. The reason for the biospy was because there is a treatment out there that has shown positive results in people who have been positive for this crossing of genes; the good news is that it is now showing positive results in people who do not have this proven trait as well, meaning, it does still remain a possible treatment if the chemo I'm on stops working.
Thank you so much for everybody who became followers and made a comment on not only the last, but any of the postings! They really lift my spirits, not to mention that it's an odd concept writing and not knowing who is reading it, so keep the comments coming!
Upcoming Appts:
Monday, July 26: Dr. Critchlow appointment
Monday, August 2: Port Day Surgery
Friday, August 6: Chemo
Friday, July 9, 2010
Chemo Treatment Three
So I figured I'd write the blog while I still had the BI, strongest meds in me, and before the misery sets in.
Chemo treatment three was prefaced with a CT Scan that was done last Saturday (details in last blog); because we were unable to use IV contrast, the only images that the radiologists and doctors were able to make out were in the lung area. Good News! The tumors in the lung area have decreased in size, and although they could make out the spleen tumor and it looks the same size, they have to assume that if some of the tumors shrunk using this combination, then that would be true of the other tumors... so carbo/taxol - here we come again!
First lets start with a big Thank You to Uncle John Nyhan, who has taken on the project of setting us up with amazing date night/getaways near B.I. the night before chemo. This treatment Auntie Sheila, Uncle Chuck and Uncle John put us up in a Radisson Boston suite. The suite was on the 24th floor and had an amazing view of the city. From there we took a taxi down to the pier where they had given us tickets to take a sunset cruise around Boston Harbor, it was fantastic - and we had perfect weather! After the cruise we strolled our way back to the hotel and had dinner, and then went for a late night swim in the hotel pool. Then came morning.
I can't tell you how wonderful it is to set a 7am alarm on a day that we have to make our way to BI! We even had time to get breakfast, pack and watch some of the Fox Zip Trip. I've had either a cold or allergies for the past few days, so I've been a little nervous about my white count. After checking in, doing vitals, having my blood drawn, we met with Dr. H who then gave us the results of the scan (first paragraph), did a normal pre-chemo physical and we discussed, again, putting in a port. It is getting nearly impossible to find a usable vein in my arms and the ones that are being found are hardened with scar tissue. Dr. H is going to be in touch with Dr. Jonathan Critchlow (my trusty surgeon), who will give his opinion, and with whom we might be meeting with for the procedure just before the next chemo treatment. We again made our way to the waiting room to await the bloodwork results.
Linda, our chemo nurse called us back to the treatment center 20 minutes later and said that we would be going ahead with chemo. Dr. H stopped by to say that my levels were just above the accepted numbers (lowest they can be 1500, mine today 1700), but that I would have to have my blood drawn a week from Monday and if I get a fever, etc. then I need to check back with them. I assumed the levels were low because of the sinus thing I'm fighting; however, the doctors feel that it is the abuse my body is taking from the chemo and that it is only going to get worse as we go on, it is not only my cbc that is low, but also my platelets. Dr. H has decided to start doing chemo every four weeks instead of every three weeks to allow more time for my body to recover. This obviously has pros and cons; although we are leaving more time between treatments for the tumors to fight back, I need to be sure that my body is ready to fight back even harder - so every four weeks it is!
Chemo: two stabs in abnormal places on my arm - we are at the point where they are finding veins one wouldn't even know are there, and hurt like hell. (ps: if anyone out there is gambling on how many stabs it takes each time, I want in on the action!) So after a very long, sore day, we finally headed home to lounge in the pool.
Also, it would mean a lot to me if the people who are reading the blog would become followers, or leave me a comment with your names so that I can honestly appreciate each person who is thinking about us through this craziness. Thank you in advance. ☺
Upcoming Appts:
Monday, July19: bloodwork
Tuesday, July 20: Dana Farber consult
Monday, July 26: Dr. Critchlow appointment
Monday, August 2: Port Day Surgery
Friday, August 6: Chemo
Chemo treatment three was prefaced with a CT Scan that was done last Saturday (details in last blog); because we were unable to use IV contrast, the only images that the radiologists and doctors were able to make out were in the lung area. Good News! The tumors in the lung area have decreased in size, and although they could make out the spleen tumor and it looks the same size, they have to assume that if some of the tumors shrunk using this combination, then that would be true of the other tumors... so carbo/taxol - here we come again!
First lets start with a big Thank You to Uncle John Nyhan, who has taken on the project of setting us up with amazing date night/getaways near B.I. the night before chemo. This treatment Auntie Sheila, Uncle Chuck and Uncle John put us up in a Radisson Boston suite. The suite was on the 24th floor and had an amazing view of the city. From there we took a taxi down to the pier where they had given us tickets to take a sunset cruise around Boston Harbor, it was fantastic - and we had perfect weather! After the cruise we strolled our way back to the hotel and had dinner, and then went for a late night swim in the hotel pool. Then came morning.
I can't tell you how wonderful it is to set a 7am alarm on a day that we have to make our way to BI! We even had time to get breakfast, pack and watch some of the Fox Zip Trip. I've had either a cold or allergies for the past few days, so I've been a little nervous about my white count. After checking in, doing vitals, having my blood drawn, we met with Dr. H who then gave us the results of the scan (first paragraph), did a normal pre-chemo physical and we discussed, again, putting in a port. It is getting nearly impossible to find a usable vein in my arms and the ones that are being found are hardened with scar tissue. Dr. H is going to be in touch with Dr. Jonathan Critchlow (my trusty surgeon), who will give his opinion, and with whom we might be meeting with for the procedure just before the next chemo treatment. We again made our way to the waiting room to await the bloodwork results.
Linda, our chemo nurse called us back to the treatment center 20 minutes later and said that we would be going ahead with chemo. Dr. H stopped by to say that my levels were just above the accepted numbers (lowest they can be 1500, mine today 1700), but that I would have to have my blood drawn a week from Monday and if I get a fever, etc. then I need to check back with them. I assumed the levels were low because of the sinus thing I'm fighting; however, the doctors feel that it is the abuse my body is taking from the chemo and that it is only going to get worse as we go on, it is not only my cbc that is low, but also my platelets. Dr. H has decided to start doing chemo every four weeks instead of every three weeks to allow more time for my body to recover. This obviously has pros and cons; although we are leaving more time between treatments for the tumors to fight back, I need to be sure that my body is ready to fight back even harder - so every four weeks it is!
Chemo: two stabs in abnormal places on my arm - we are at the point where they are finding veins one wouldn't even know are there, and hurt like hell. (ps: if anyone out there is gambling on how many stabs it takes each time, I want in on the action!) So after a very long, sore day, we finally headed home to lounge in the pool.
Also, it would mean a lot to me if the people who are reading the blog would become followers, or leave me a comment with your names so that I can honestly appreciate each person who is thinking about us through this craziness. Thank you in advance. ☺
Upcoming Appts:
Monday, July19: bloodwork
Tuesday, July 20: Dana Farber consult
Monday, July 26: Dr. Critchlow appointment
Monday, August 2: Port Day Surgery
Friday, August 6: Chemo
Sunday, July 4, 2010
CT Scan 7/3/10
Surprise, Surprise!
I was under the assumption that I was going in for a chest scan; however, come to find out this was not the case. The order was for a chest, abdomen and pelvis scan, which you would think wouldn't matter... well it does. Essentially what it means is that I have to drink the disgusting pre-scan drink, and the process is three times as long. While I was choking down the liquid internal highlighters, the tech (who knows me from before) came out to say hi and let me know that they were going to call the IV nurse right away instead of having the Radiology Techs try first - a reason I remain loyal to BI.
When the IV nurse, who has done my IV 3 times before arrived, she was not so successful this time around. She stuck me three times and each time fished around for the vein, then two different techs each tried once. Twice a vein was hit, but there is so much scar tissue that the IV kept popping back out and would flush (flush = pushing fluid through). It ended up that the radiologists decided that they would do the CT Scan without using the IV contrast.
I just hope that the images are clear enough for the radiologists and Dr. Huberman to accurately compare the tumors; although I have prepared myself for an unexpected call this week telling me that we need to re-due the scan before Friday.
I am scheduled to go in Friday to find out the results of the scan; the scan is meant to tell us if the carbo/taxol combo is working and if we should continue with that chemo or we need to seek an alternative treatment.
We Shall See!
Next Appointment: Friday, July 9th
I was under the assumption that I was going in for a chest scan; however, come to find out this was not the case. The order was for a chest, abdomen and pelvis scan, which you would think wouldn't matter... well it does. Essentially what it means is that I have to drink the disgusting pre-scan drink, and the process is three times as long. While I was choking down the liquid internal highlighters, the tech (who knows me from before) came out to say hi and let me know that they were going to call the IV nurse right away instead of having the Radiology Techs try first - a reason I remain loyal to BI.
When the IV nurse, who has done my IV 3 times before arrived, she was not so successful this time around. She stuck me three times and each time fished around for the vein, then two different techs each tried once. Twice a vein was hit, but there is so much scar tissue that the IV kept popping back out and would flush (flush = pushing fluid through). It ended up that the radiologists decided that they would do the CT Scan without using the IV contrast.
I just hope that the images are clear enough for the radiologists and Dr. Huberman to accurately compare the tumors; although I have prepared myself for an unexpected call this week telling me that we need to re-due the scan before Friday.
I am scheduled to go in Friday to find out the results of the scan; the scan is meant to tell us if the carbo/taxol combo is working and if we should continue with that chemo or we need to seek an alternative treatment.
We Shall See!
Next Appointment: Friday, July 9th
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