Small Delay
WOW what a roller coaster. I don’t know why I fell apart it is not a big deal to wait one more week; it was just his voice when he first called. I should know better I have been married to him for 32 (all most 33) years. I have learned not to react to his first reaction but today I FORGOT, silly me. One more day on the roller coaster but tonight at the beach I was off the ride for a couple of hours.
Thanks everyone for listening, Love you all! Erica
PS- I hate insurance companies!
Comments
-
Stiff upper lip
Erica,
It takes a stiff upper lip to be a caregiver. The tears for me come at the most unpredictable times. But I'm learning to take a deep breath. exercise helps too.0 -
Excercisebirdiequeen said:Stiff upper lip
Erica,
It takes a stiff upper lip to be a caregiver. The tears for me come at the most unpredictable times. But I'm learning to take a deep breath. exercise helps too.
Birdie,
You are right about the exercise I have kept up with going to the gym but this week I only went one day. Wednesday we were at hospital all day for appointments with surgeon and pre-op instructions. Hospital is over an hour away from our home. Thursday I went to my Fantasy Football live draft after work (so no gym again). I just realized that I need a good work out!
Thanks for the reminder!
Erica0 -
Sometimes it just starts and won't stop
HI Erica,
I had a moment this week in the doctor's office, unfortunately in front of Jeff. I have written about it on the board so I won't go into details. I couldn't help it, everything just let loose inside of me. Jeff told me to stop and I couldn't, I finally pulled it together when I had to drive us home. I kept it cool the rest of the day. Went in to work on Friday, a co-worker ame over to find out how the tests went. I started to tell her and the dam broke again. At least this time Jeff was unaware of the crying. I let it all out told her everything that has me scared, angry, and frustrated. This person I would consider a friend, she stood there and cheered me up. She said just get through next Wednesday (surgeon appt to make sure Jeff is still a candidate). She realized that I am just starting to run out of steam. I, like you I am sure, have been going full steam ahead for about 2 months, it is catching up to me. It is getting harder to keep my emotions in check, all I want is for the cancer to be out of Jeff's body. I am starting to feel desperate for that, and I think that is why these past few days are getting harder.
I agree with the exercise tip! I wasn't able to hit the gym for the last three days because we were at docs appts, and I was just too tired yesterday. But, I found the week before that it really helped me emotionally. Jeff works today, so I will make sure I get myself to the gym today! Try to keep smiling and just know that surgery is getting closer everyday. Have more nights like last night, and try not to let cancer ruin your days
Niki0 -
Sometimes!NikiMo said:Sometimes it just starts and won't stop
HI Erica,
I had a moment this week in the doctor's office, unfortunately in front of Jeff. I have written about it on the board so I won't go into details. I couldn't help it, everything just let loose inside of me. Jeff told me to stop and I couldn't, I finally pulled it together when I had to drive us home. I kept it cool the rest of the day. Went in to work on Friday, a co-worker ame over to find out how the tests went. I started to tell her and the dam broke again. At least this time Jeff was unaware of the crying. I let it all out told her everything that has me scared, angry, and frustrated. This person I would consider a friend, she stood there and cheered me up. She said just get through next Wednesday (surgeon appt to make sure Jeff is still a candidate). She realized that I am just starting to run out of steam. I, like you I am sure, have been going full steam ahead for about 2 months, it is catching up to me. It is getting harder to keep my emotions in check, all I want is for the cancer to be out of Jeff's body. I am starting to feel desperate for that, and I think that is why these past few days are getting harder.
I agree with the exercise tip! I wasn't able to hit the gym for the last three days because we were at docs appts, and I was just too tired yesterday. But, I found the week before that it really helped me emotionally. Jeff works today, so I will make sure I get myself to the gym today! Try to keep smiling and just know that surgery is getting closer everyday. Have more nights like last night, and try not to let cancer ruin your days
Niki
Hi Nikki,
I did read your post about you losing it at doctor’s office. I did not respond yet because I was doing some research about PET/CT readings before I wrote back Actually I stayed up very late last night (1:30 AM) looking on inter-net about PET/CT results after Red/Chemo in esophagus cancer patients. I spoke to one of my very close work friends before I went home yesterday and she listened (she always does) and she said, “you are just full& the dam had to break”. Well when my dam broke the water sure did come rushing out. WE found received diagnosis May 17 & you are right it has been non-stop every since. Back to you and Jeff’s PET/CT. the radiation cause inflammation and the FDG “lights up” inflammation too. If you saw my post about the surgeon visit we had John’s pet/ct looks worse than the one before treatment (higher suv count) in the area of the cancer. He is still a candidate for surgery (if we get auth) because the cancer has not Mets to any other organ. I feel confident that Jeff is in the same situation. You hang in there too! Glad we have this place (and each other) to help us through this journey! I can’t go to the gym today it’s my Mother’s birthday and my sister decides that we would all go out to breakfast. So instead of burning calories I’m going to eat more calories. LOL Well I guess I could go after breakfast LOL! Have a good day! How was the Eagles Game? I am a big football fan (even in an all girls fantasy football league)!
I copied a small part of an article regarding the pit falls of PET/CT post treatment.
_______________________________________________________________________________________________
radiographics.rsna.org/content/27/6/1635.full#sec-8
PET/CT of Esophageal Cancer: Its Role in Clinical Management
Interpretative Pitfalls in Determination of Therapeutic Response with PET/CT
After completion of neoadjuvant therapy, inflammation and ulceration within the esophagus resulting from radiation therapy can cause increased FDG uptake and persistently raised SUVmax, which may be confused with residual viable tumor (63). Radiation esophagitis begins to be seen after the first 2 weeks of treatment (66) and is more common with higher radiation doses, ranging from 15% of patients after 14 days of chemotherapy and radiation therapy (to 40 Gy) (59) to 69% of patients after 34 days of chemotherapy and radiation therapy (to 50.4 Gy) (63). Evaluating treatment response within the first 2 weeks of treatment, before esophagitis has had time to develop, may therefore be more accurate and less prone to false-positive findings; however, there are limited data available to support this recommendation at this time, and the optimal timing of PET/CT is a subject of ongoing research.0 -
Hang In There
Erica,
Your post really touched me. After we left Moffitt the other day with the news about carcinamatosis my wife kind of lost it a little bit. Being Korean, she hides her emotions for the most part, but that really hit her after I explained what it is. Fortunately Dr Meredith doesn't think it is that after seeing (my yet to be approved by the insurance company) PET scan.
I have my colonoscopy scheduled for Monday the 22nd. I think I mentioned that Dr Meredith saw an enlarged lymph node near my left clavicle he wants to biopsy, so I have that scheduled for Aug 29th. Happily, I check the MyMoffit web site yesterday and saw they have me scheduled for my pre-surgery workup on the 30th so if the lymph node comes back okay, John and I may be roomates after all.
Latest obstacle? To do the biopsy I have to come off my Plavix and aspirin for 7 days. I've been on it for 9 months after my stents....protocol calls for a year but doing my research I found that that was a number the FDA came up with in 2006 due to a "high incident rate" of stent thrombosis from 2004-2006. The stats I came up with is about 1 in 100 people who stop Plavix at the 1 year mark have a problem. That's a risk I guess I'll have to take because it's 1 in 100 for a heart attack but it's 100 in 100 that I'll die from this cancer if it spreads.
Kind of got off track there. Essentially what your post reminded me of is that it's a give and take between the patient and the caregiver. To support each other and lift each other up when one gets down.
Also, I'm kind of amazed at our parallels.........I'll be 59 in November, I was a heavy smoker for 40+ years (I wonder what my "lung age" is going to be). Chong and I had our 32nd anniversary in May so we're in our 33rd year. Same disease, same surgeon and if I keep losing probably the same weight before long.
Anyway, hang in there and in 10 years we'll all go skipping down St Pete Beach together.
Michael Daniels
Brandon, FL0 -
kleenexhopper52 said:Hang In There
Erica,
Your post really touched me. After we left Moffitt the other day with the news about carcinamatosis my wife kind of lost it a little bit. Being Korean, she hides her emotions for the most part, but that really hit her after I explained what it is. Fortunately Dr Meredith doesn't think it is that after seeing (my yet to be approved by the insurance company) PET scan.
I have my colonoscopy scheduled for Monday the 22nd. I think I mentioned that Dr Meredith saw an enlarged lymph node near my left clavicle he wants to biopsy, so I have that scheduled for Aug 29th. Happily, I check the MyMoffit web site yesterday and saw they have me scheduled for my pre-surgery workup on the 30th so if the lymph node comes back okay, John and I may be roomates after all.
Latest obstacle? To do the biopsy I have to come off my Plavix and aspirin for 7 days. I've been on it for 9 months after my stents....protocol calls for a year but doing my research I found that that was a number the FDA came up with in 2006 due to a "high incident rate" of stent thrombosis from 2004-2006. The stats I came up with is about 1 in 100 people who stop Plavix at the 1 year mark have a problem. That's a risk I guess I'll have to take because it's 1 in 100 for a heart attack but it's 100 in 100 that I'll die from this cancer if it spreads.
Kind of got off track there. Essentially what your post reminded me of is that it's a give and take between the patient and the caregiver. To support each other and lift each other up when one gets down.
Also, I'm kind of amazed at our parallels.........I'll be 59 in November, I was a heavy smoker for 40+ years (I wonder what my "lung age" is going to be). Chong and I had our 32nd anniversary in May so we're in our 33rd year. Same disease, same surgeon and if I keep losing probably the same weight before long.
Anyway, hang in there and in 10 years we'll all go skipping down St Pete Beach together.
Michael Daniels
Brandon, FL
Ladies and gentlemen, Kleenex are stocked in every store you venture into for a reason. I have certainly increased market shares in their brand in the last 7 months. I know I've said it before, and I'll probably say it again, but being a caregiver is so difficult and frustrating. Sometimes the straw that broke the camel's back hits you when you least expect it. I know I've had several of those moments. Well, ok, actually many of those moments! It can be someone simply asking me how I'm doing that sets me off. Sometimes we just need a good ole cry. My patience for trivial daily stuff is at a zero, and I cry literally over spilled milk somedays. Other days are good, and you could hit me with a brick and I wouldn't flinch. Lately there seems to be a wrecking ball bashing us over and over again. I'm sure you all know that feeling as well.
I know there are many bumps in the road, and I pray that all of you can have the surgery you so much need and deserve. Be well my friends,
Chantal
wife of Lee, stage ivb0 -
Hanging out on St. Pete Beach!hopper52 said:Hang In There
Erica,
Your post really touched me. After we left Moffitt the other day with the news about carcinamatosis my wife kind of lost it a little bit. Being Korean, she hides her emotions for the most part, but that really hit her after I explained what it is. Fortunately Dr Meredith doesn't think it is that after seeing (my yet to be approved by the insurance company) PET scan.
I have my colonoscopy scheduled for Monday the 22nd. I think I mentioned that Dr Meredith saw an enlarged lymph node near my left clavicle he wants to biopsy, so I have that scheduled for Aug 29th. Happily, I check the MyMoffit web site yesterday and saw they have me scheduled for my pre-surgery workup on the 30th so if the lymph node comes back okay, John and I may be roomates after all.
Latest obstacle? To do the biopsy I have to come off my Plavix and aspirin for 7 days. I've been on it for 9 months after my stents....protocol calls for a year but doing my research I found that that was a number the FDA came up with in 2006 due to a "high incident rate" of stent thrombosis from 2004-2006. The stats I came up with is about 1 in 100 people who stop Plavix at the 1 year mark have a problem. That's a risk I guess I'll have to take because it's 1 in 100 for a heart attack but it's 100 in 100 that I'll die from this cancer if it spreads.
Kind of got off track there. Essentially what your post reminded me of is that it's a give and take between the patient and the caregiver. To support each other and lift each other up when one gets down.
Also, I'm kind of amazed at our parallels.........I'll be 59 in November, I was a heavy smoker for 40+ years (I wonder what my "lung age" is going to be). Chong and I had our 32nd anniversary in May so we're in our 33rd year. Same disease, same surgeon and if I keep losing probably the same weight before long.
Anyway, hang in there and in 10 years we'll all go skipping down St Pete Beach together.
Michael Daniels
Brandon, FL
Michael,
This whole thing is rough on us all, Thank God I found this discussion board without it I think I would have lost my mind!
Dr. Meredith wants John to have colonoscopy before surgery too. He said it that in a very rare case if he needs to use a piece of the colon to replace esophagus he needs to know colon is healthy. Cannot have scope done at Moffitt (insurance) so I had to jump through hoops to get it booked. He is scheduled for Wednesday. Try not to worry about plavix/asprin You do not have to stay off the medication for ever, after surgery you will have a whole team of the best doctors, nurses, & health care professionals checking labs, vitals every possible thing that can be checked and if there is an issue they will be all over it.
We do have a lot of parallels, John turned 59 in April, and we will be married 33 years October 27th.
We all just need to keep reminding each other One Day at a Time! With the help of all of ours friends and family we will get through this. Like you said when one of us is down we have to prop the other up, “It takes a village”!
Looking forward to hanging at the beach with you guys!
Erica0 -
KleenexDaisylin said:kleenex
Ladies and gentlemen, Kleenex are stocked in every store you venture into for a reason. I have certainly increased market shares in their brand in the last 7 months. I know I've said it before, and I'll probably say it again, but being a caregiver is so difficult and frustrating. Sometimes the straw that broke the camel's back hits you when you least expect it. I know I've had several of those moments. Well, ok, actually many of those moments! It can be someone simply asking me how I'm doing that sets me off. Sometimes we just need a good ole cry. My patience for trivial daily stuff is at a zero, and I cry literally over spilled milk somedays. Other days are good, and you could hit me with a brick and I wouldn't flinch. Lately there seems to be a wrecking ball bashing us over and over again. I'm sure you all know that feeling as well.
I know there are many bumps in the road, and I pray that all of you can have the surgery you so much need and deserve. Be well my friends,
Chantal
wife of Lee, stage ivb
Chantal,
With stock market the way it has been I should look at Kleenex stock LOL!
I feel fine today except when I think about yesterday than I start beating myself up (but I think I’m done with that too). I feel thankful that today is a better day! Yesterday afternoon was the perfect storm and the waters are calm tonight!
You are an amazing, strong & a very kind women and I appreciate your support!
I think of you & Lee often, read all of your posts (nice to see Lee posting too). The road is bumpy but the bumps are easier when you have someone to share the ride with. When the wrecking ball comes crashing in on you I am here to listen to you too! We are all in this together!
Your Friend !
Erica0 -
Thanks for the info!Ericalynn said:Sometimes!
Hi Nikki,
I did read your post about you losing it at doctor’s office. I did not respond yet because I was doing some research about PET/CT readings before I wrote back Actually I stayed up very late last night (1:30 AM) looking on inter-net about PET/CT results after Red/Chemo in esophagus cancer patients. I spoke to one of my very close work friends before I went home yesterday and she listened (she always does) and she said, “you are just full& the dam had to break”. Well when my dam broke the water sure did come rushing out. WE found received diagnosis May 17 & you are right it has been non-stop every since. Back to you and Jeff’s PET/CT. the radiation cause inflammation and the FDG “lights up” inflammation too. If you saw my post about the surgeon visit we had John’s pet/ct looks worse than the one before treatment (higher suv count) in the area of the cancer. He is still a candidate for surgery (if we get auth) because the cancer has not Mets to any other organ. I feel confident that Jeff is in the same situation. You hang in there too! Glad we have this place (and each other) to help us through this journey! I can’t go to the gym today it’s my Mother’s birthday and my sister decides that we would all go out to breakfast. So instead of burning calories I’m going to eat more calories. LOL Well I guess I could go after breakfast LOL! Have a good day! How was the Eagles Game? I am a big football fan (even in an all girls fantasy football league)!
I copied a small part of an article regarding the pit falls of PET/CT post treatment.
_______________________________________________________________________________________________
radiographics.rsna.org/content/27/6/1635.full#sec-8
PET/CT of Esophageal Cancer: Its Role in Clinical Management
Interpretative Pitfalls in Determination of Therapeutic Response with PET/CT
After completion of neoadjuvant therapy, inflammation and ulceration within the esophagus resulting from radiation therapy can cause increased FDG uptake and persistently raised SUVmax, which may be confused with residual viable tumor (63). Radiation esophagitis begins to be seen after the first 2 weeks of treatment (66) and is more common with higher radiation doses, ranging from 15% of patients after 14 days of chemotherapy and radiation therapy (to 40 Gy) (59) to 69% of patients after 34 days of chemotherapy and radiation therapy (to 50.4 Gy) (63). Evaluating treatment response within the first 2 weeks of treatment, before esophagitis has had time to develop, may therefore be more accurate and less prone to false-positive findings; however, there are limited data available to support this recommendation at this time, and the optimal timing of PET/CT is a subject of ongoing research.
Hi Erica,
Thanks for taking the time to relay the info about PET/CTs and EC, it really means a lot, and the info helped to clam my worries. I really wish the doctor's would advise on this kind of thing before they give you the results. Maybe a diclaimer "WARNING! Radiation therapy does cause inflamation in the body, due to this the results I am about to read you may be overstated in reagards to cancer" HAHA...can you tell I am in the chemicals business, I review a lot of hazard warning labels
I am hoping our short trip to the E.R. for a fever (got up to 101 for a little bit, back down to 98.2 today, THANK GOD) was a result of my husbands body trying to fight off inflamation which it thinks is infection. That is what I am telling myself anyway, have a doctors appt tomorrow to check it out.
Now fun stuff...football! We had a very good time at the Eagles game, even though we were perched near the tippy top of the stadium. Jeff was just given another pair of tickets for the game this Thursday, hopefully the docs will say he can go. I haven't been a big Eagles fan ever since they brought on Michael Vick. My husband and I have two dogs one of which is a pit bull mix from our local shelter, so it felt like a slap in the face when the team signed him. That is how crazy Philadelphia sports fans are..haha. But, I am reconciling my differences becuase I know Jeff wants to share time together and he is a HUGE Philly sports fan. While I would prefer to watch the Phillies or Flyers, I have given in and even bought an Eagles t-shirt for the occasion. Now, I hope we can still be friends after this but I can't stand the Tampa Bay Bucaneers, they knocked us out of the playoffs a few years back and I am good at holding grudges. We pretty much dis-like every Tampa team for one reason or another. The ironic thing about this is that Jeff and I absolutely LOVE the Tampa Bay area and in particular St. Petersburg and St. Pete Beach. We were just down there in April with friends, and have gone on vacation to the area for the last three years. We were kicking around the idea of moving there, but were putting it off. May be back on the radar now though, after learning the important lesson of not putting things off that would really make you happy. Anyway since we are friends I hope that your team does well this season, and I hope you kick butt with your FF leauge
Niki0
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