Day 3 of tretment - Well, what should have been a short rad treatment and followup with rad onc doc turned out to be another marathon day. Because I've been running fevers (chills and sweats) the doctors are monitoring me closely. My BP was very low so I had to have an infusion of liquid today as well as some blood work and testing to be sure there isn't an infection. They think it is a tumor fever as a few other people have come in with mild fevers too. It was also decided to remove my PICC line on Friday at 12:30 when they remove my chemo kangaroo pack I've been carrying around. I'm glad. It's on my right arm and difficult for me to clean or flush with saline every week to keep it from getting infected. If I had the port put in I could have taken care of that easily as my right hand would be available. Next time I get a PICC line in will be when I have my final week of tratment. Hopefully by then Harvey will be toast.
I love all your comments and savor the love,prayers and thoughts you send through this blog. I reread them constantly, when I feel down or when I need to energize my fight. Know how much it is appreciatred and welcomed. I send all of you a huge virtual hug. Real hugs right now would do me in...I cry so easily. Feel like one big wimpy baby at times but I guess that is to be expected. Okay, going to grab Bert the Hippo and get settled in for the night. Tomorrow is Day 4 of treatment...only 30 or so more to go...whoo hoo. Love you all, be well, Marilyne
Wednesday, June 30, 2010
Tuesday, June 29, 2010
June 29, 2010
Day 2 of Rad and chemo. So far pretty uneventful. Keep praying. I am more coherent today (they gave med some relaxing drugs when I had PICC line put in and needless to say I was 'relaxed' -- so some of my misspellings and vocabulary errors were blatantly screaming out at me this morning when I re-read them. Rich does not want me writing, driving, cooking, walking or talking while on this medication again. Seems I was walking around with my farting hippo and doing some damage with that as well. I apologize for the inconsistency in my blogging yesterday or from now on I will give you a warning that I am drugged and read at your own risk. :-)
Will write again with next doctor visit or something becomes more eventful. Be well, Marilyne
Will write again with next doctor visit or something becomes more eventful. Be well, Marilyne
Monday, June 28, 2010
PICCS and Radiation and chemo oh my!!!
Okay,whichever one of you was praying this morning for me to have an eneventful session, consider it done.
We arrived at the hospital at 8:00 for an 8;30 radiation treatment. The treatment itself takes about an hour the first time as they need to measure and set you in the case plus focus the beams in the right areas. Then the zap Harvey. A few minutes in each spot all around my pelvic, hip and backside area. It is painful i the sense the muscles tighen up right now - you have to very still while this zapping is going on. To take my mind off the discomfort I just kept saying with each zap...that's for you Harvey, Take taht you s.o.b., whose your daddy now, huh?? (Maybe I should not have watched Mr. & Mrs. Smith last night...lol)
Then we went to Fairview Hospital and I was given a PICC line (the nurse was wonderful, knew exactly what she was doing - only a pinch for novacaine) - then an xray to make sure the picc went to the right vein and then back for my infusion of the purple stuff (strong chemo cocktail) and wait 1/2 hour for symptoms and then the chemo gal came and set me up. She is going to come back in 96 hours and remove the bottle and leave the port thing for next time. Its all good. Just very very tired.
Going to take a nap and see if I can keep drinking more water. Love you, Mar
We arrived at the hospital at 8:00 for an 8;30 radiation treatment. The treatment itself takes about an hour the first time as they need to measure and set you in the case plus focus the beams in the right areas. Then the zap Harvey. A few minutes in each spot all around my pelvic, hip and backside area. It is painful i the sense the muscles tighen up right now - you have to very still while this zapping is going on. To take my mind off the discomfort I just kept saying with each zap...that's for you Harvey, Take taht you s.o.b., whose your daddy now, huh?? (Maybe I should not have watched Mr. & Mrs. Smith last night...lol)
Then we went to Fairview Hospital and I was given a PICC line (the nurse was wonderful, knew exactly what she was doing - only a pinch for novacaine) - then an xray to make sure the picc went to the right vein and then back for my infusion of the purple stuff (strong chemo cocktail) and wait 1/2 hour for symptoms and then the chemo gal came and set me up. She is going to come back in 96 hours and remove the bottle and leave the port thing for next time. Its all good. Just very very tired.
Going to take a nap and see if I can keep drinking more water. Love you, Mar
Friday, June 25, 2010
June 25, 2010 - Simple Thoughts
The last few days I've been having a virtual 'conversation' with a woman on one of the cancer sites who came in, verbal guns blazing through a facade of realistic thinking that took the wind out of my sail as well as others on the forum. The negativity, anger and ugliness that she exuded was more than I could bear. I wrote back. First just stating an opinion and offering friendship and listening to which she slapped my hand. Basically she said the forums are cult followings that instill happy feelings where there should be none and realism is not well accepted at these cancer sites.
All I can say is I was happy we were all not sitting around a big circle in person at some type of therapy because I would have leap across the room and slapped the crap out of her. Suffice it to say I made my own point and I will not be writing her again in the blog but ignoring her, no matter what she says. Negativity, anger or pessimism is not in my vocabulary and I refuse to listen to it.
Chemo/rad starts Monday so I do not know how often I will be in here. If I cannot and a week goes by, I will have Rich come in and write a little blerb - but then I need to teach him how to do this on my laptop. Oh boy.
Know that I appreciate each and every one of you. Be well, Marilyne
All I can say is I was happy we were all not sitting around a big circle in person at some type of therapy because I would have leap across the room and slapped the crap out of her. Suffice it to say I made my own point and I will not be writing her again in the blog but ignoring her, no matter what she says. Negativity, anger or pessimism is not in my vocabulary and I refuse to listen to it.
Chemo/rad starts Monday so I do not know how often I will be in here. If I cannot and a week goes by, I will have Rich come in and write a little blerb - but then I need to teach him how to do this on my laptop. Oh boy.
Know that I appreciate each and every one of you. Be well, Marilyne
Wednesday, June 23, 2010
June 23 - Nothing Remains Constant
Well Harvey is really irritating me now. My port was canceled for tomorrow due to the low grade fevers I've been experiencing and instead tomorrow I need to go for an abdominal CT scan to be sure there are no abscesses. Monday I will have PICC line installed instead and do my first radiation --- providing the other scans and another blood test come back okay. I hate you Harvey. Drop Dead. Everyone else, Be well. Marilyne
Tuesday, June 22, 2010
June 22, 2010 Meet Harvey
I created a sketch of what I believed Harvey looked like and put it up on my recovery wall. My son Justin took it home and embellished it quite a bit to come up with the end product pictured here.
I'm visual. I need to 'see' what I am fighting. And this is about as good as it gets.
So...I'm introducing you all to Harvey and hope you hate him as much as I do. Keep praying...he's a nasty little sucker. Be well, Marilyne
Monday, June 21, 2010
June 21st
Just a short update. My port will be implanted on Thursday as outpatient surgery. I also am supposed to wear a medical alert bracelet now that says that I have an implanted port. I guess it helps the medical staff if I need blood, fluids or whatever to ascertain they do not start stabbing my arms with needles when they can use the port already implanted. Should be an interesting procedure. I will be in twilight sleep. I like that. You are 'awake' but you really do not care what is going on around you. Exactly how I want to be for this procedure.
As it stands now, I start radiation therapy on Monday 28th. I am pretty sure they will hook me up with a chemo pack to also have beginning Monday and will probably remove it on Friday. Not sure how that works. I know I have to have it on for at least five days (chemo).
Good news is my hippo arrived this morning. I am trying to keep some semblance of sanity and humor throughout this insane surreal period in my and my family's life...one of the things I asked Rich was if I could have a puppy and he said no (realistically a puppy would do me in right now, perhaps later on though....) However, I wanted something warm and fuzzy to hold now and then and to be near me during stressful moments that was not human. I was watching NCIS (one of my all time favorite shows) and one of the characters, Abby the Goth forensic scientist, who I love because she is so bohemian, has this hippo she hugs when she is upset on the show. The hippo, when hugged, emits a loud gaseous sound. I thought THAT is what I need.
Thank God for Google because I found it - albeit in England - and ordered it. Arrived today. So far, I have hugged my little hippo dozens of times to Rich's dismay. He's a cute little bugger, about the size of a small dog...and every time I get annoyed at Harvey, I hug Bert the Hippo and I feel a lot better. I have a feeling I will be hugging him a lot over the next several weeks. If I am able will post again on Friday, otherwise over the weekend before the real roller coaster ride begins. Be well, Marilyne
As it stands now, I start radiation therapy on Monday 28th. I am pretty sure they will hook me up with a chemo pack to also have beginning Monday and will probably remove it on Friday. Not sure how that works. I know I have to have it on for at least five days (chemo).
Good news is my hippo arrived this morning. I am trying to keep some semblance of sanity and humor throughout this insane surreal period in my and my family's life...one of the things I asked Rich was if I could have a puppy and he said no (realistically a puppy would do me in right now, perhaps later on though....) However, I wanted something warm and fuzzy to hold now and then and to be near me during stressful moments that was not human. I was watching NCIS (one of my all time favorite shows) and one of the characters, Abby the Goth forensic scientist, who I love because she is so bohemian, has this hippo she hugs when she is upset on the show. The hippo, when hugged, emits a loud gaseous sound. I thought THAT is what I need.
Thank God for Google because I found it - albeit in England - and ordered it. Arrived today. So far, I have hugged my little hippo dozens of times to Rich's dismay. He's a cute little bugger, about the size of a small dog...and every time I get annoyed at Harvey, I hug Bert the Hippo and I feel a lot better. I have a feeling I will be hugging him a lot over the next several weeks. If I am able will post again on Friday, otherwise over the weekend before the real roller coaster ride begins. Be well, Marilyne
Sunday, June 20, 2010
June 20, 2010
Harvey was acting up last night. Had a fever of 100.6 and thought I might have to go into the hospital. Tylenol gets rid of the fever but doesn't allow them to try to ascertain where the fever is coming from or why. Blood work good, tests good, everything seems fine. No sore throat, no cold. I just think Harvey is sitting there trying to be devious to postpone Chemo and my port. Well my doc has another idea if we can't do the port. I don't care how sick I am...Harvey is dead meat and on my radar!
On another note, all you dads reading this blog (HAPPY FATHER'S DAY!) Richard is happily sitting downstairs watching parts of the World Cup and I'm sure that is a great gift for him - us leaving him alone to do so. Will write more during the week after they figure out why I have fevers and if and when the port/picc line is put in. Be well, Marilyne
On another note, all you dads reading this blog (HAPPY FATHER'S DAY!) Richard is happily sitting downstairs watching parts of the World Cup and I'm sure that is a great gift for him - us leaving him alone to do so. Will write more during the week after they figure out why I have fevers and if and when the port/picc line is put in. Be well, Marilyne
Thursday, June 17, 2010
June 18 Friday
First, just a general comment but an important one: I re-read some of the responses you all have made to this blog - and I'm sure I will be doing that often over the next months. I can honestly say that the family, friendship and love that comes through your posts take my breath away and make me feel so enveloped in warmth and safe. I am so blessed to know and love you all. So blessed. Not everyone is writing in the blog -- there are countless numbers of emails as well, cards in the mail, thoughts and prayers. I just feel overwhelmed by it all and wanted you all to know how much your thoughts, prayers and caring mean to me. More than you will ever know. It is the wind that will carry my wings through whatever I need to fly through.
Today Rich and I went to the U for my 'simulation' - they retrofit you to a mold that holds you in place while they zap the hell out of Harvey. They were writing all over my belly and I asked "so...do I have to rewrite on myself in sharpie or watch how I bathe or shower not to take the lines away?" and they said well, you can do that OR you can get three little tattoos. Tattoos? So I asked about it. Three small pinpricks and I don't have to worry about whether the lines disappear or not. So I said okay. So now I have three red dots on me (permanent) and black magic marker. I always wanted a tattoo. Red dots are not exactly what I had in mind but under the circumstances, they will do.
While I was there Rich called the oncology nurse about my low grade fevers. They are concerned about it (no duh, so am I). Another positive about the U of M campus is everything is right there...oncology, radiology, surgery, hospital - whatever you need it is there. So the onc nurse talked to my onc doctor who suggested I be checked out for any type of infection they might have missed or to be sure the original surgery site wasn't infected. While I was there a urinalysis was needed as well so I just had to walk across the street and around the corner and covered all those bases. Grant it - the visit went from 8 am until noon - again - but this is how thorough they are. Even for my radiology I have a card with bar code on it and all I have to do is scan myself in and they take me in the order I get there for my zap. (Take that Harvey).
I still feel bad about Rich having to drive to the hospital so much and more over the next five weeks. He brings his laptop and sits upstairs when conductivity is better and does his job...I can't imagine this is easy on him although he never shows he is upset or angry or frustrated. I picked the right man to marry. I'm not sure anyone else would be willing to step up to the plate like this.
Okay, game plan now is to have the port implanted next Thursday rather than Monday to give antibiodics more time to work - don't need fevers - and then Chemo/Rad to start the following Monday. Chemo Monday through Friday from a pump I will carry on my person and Rad every day Monday to Friday. After that Rad until the last week and then the chemo/rad combo once again and then I'm done. If everything goes the way I hope it will, I will be done around mid August with treatment and then I can start to heal.
Harvey will NOT win. I won't let him. My family won't let him. My friends won't let him and my wonderful Medical team won't let him. Be well, Marilyne
Today Rich and I went to the U for my 'simulation' - they retrofit you to a mold that holds you in place while they zap the hell out of Harvey. They were writing all over my belly and I asked "so...do I have to rewrite on myself in sharpie or watch how I bathe or shower not to take the lines away?" and they said well, you can do that OR you can get three little tattoos. Tattoos? So I asked about it. Three small pinpricks and I don't have to worry about whether the lines disappear or not. So I said okay. So now I have three red dots on me (permanent) and black magic marker. I always wanted a tattoo. Red dots are not exactly what I had in mind but under the circumstances, they will do.
While I was there Rich called the oncology nurse about my low grade fevers. They are concerned about it (no duh, so am I). Another positive about the U of M campus is everything is right there...oncology, radiology, surgery, hospital - whatever you need it is there. So the onc nurse talked to my onc doctor who suggested I be checked out for any type of infection they might have missed or to be sure the original surgery site wasn't infected. While I was there a urinalysis was needed as well so I just had to walk across the street and around the corner and covered all those bases. Grant it - the visit went from 8 am until noon - again - but this is how thorough they are. Even for my radiology I have a card with bar code on it and all I have to do is scan myself in and they take me in the order I get there for my zap. (Take that Harvey).
I still feel bad about Rich having to drive to the hospital so much and more over the next five weeks. He brings his laptop and sits upstairs when conductivity is better and does his job...I can't imagine this is easy on him although he never shows he is upset or angry or frustrated. I picked the right man to marry. I'm not sure anyone else would be willing to step up to the plate like this.
Okay, game plan now is to have the port implanted next Thursday rather than Monday to give antibiodics more time to work - don't need fevers - and then Chemo/Rad to start the following Monday. Chemo Monday through Friday from a pump I will carry on my person and Rad every day Monday to Friday. After that Rad until the last week and then the chemo/rad combo once again and then I'm done. If everything goes the way I hope it will, I will be done around mid August with treatment and then I can start to heal.
Harvey will NOT win. I won't let him. My family won't let him. My friends won't let him and my wonderful Medical team won't let him. Be well, Marilyne
Wednesday, June 16, 2010
June 16, 2010
Today I thought would be a quick visit to the oncologist, more information and home. Rich and I were there from 9 AM until 1PM. The team that I have is phenomenal. They work in tandem like a fine tuned clock. My oncologist spoke with me for almost two hours as well.
The whole treatment program will be 5-7 weeks long. This means I will be going to the U of M every Monday through Friday and meeting with my radiologist every Weds to make sure everything is going okay and meeting with my oncologist as well once a week for her to be sure everything is going okay, having blood drawn---they watch you like a hawk so my initial concern with all these chemicals in my body how will they know if something is amiss? How will I know? They are so on top of it and I have umpteen numbers to call day or night. Amazing. I feel like I have this special lifeline to the medical staff and that gives me peace. While daunting and a bit overwhelming for me to think about all this that will be going on, at the same time, I feel comforted by the fact they are so diligent. How diligent? when I mentioned I had a fever the last two evenings, the chemo doctor called my surgeon (head of this team) and he prescribed prophylactic antibiotics plus take a chest xray and blood work to be sure my white count was good and I wasn't anemic. That's why we were there so long. Thorough. My life is in their hands and they are taking this more seriously than I am. I felt absolutely secure and safe in their hands.
Friday I go through a simulation where they measure everything to pinpoint where radiation will be zapped - assumption is they will do the suspicious nodes first just in case the little spawn are in there of Harvey's and then as time goes on start to give Harvey a piece of their (and my) mind. He's a big sucker so they will need to be very aggressive...which means I will be getting the brunt of it by week 3 or 4 when immunity is lowest and symptoms start to accelerate and appear or get worse. Right at this moment my thought is: "Bring it on" -- remind me of that in the weeks to come when my mantra might change to "oh ^%$#, get me outta here!".
Monday I'm having a 'port' put in - not wine, unfortunately although that would be a nice addition to the chemo and bloodwork. It is a device implanted under the skin of my collarbone where they can infuse the chemo (which will be attached to me in a small container) 24/7 for five days the first week of radiation and the last week of radiation (if my body holds up). It can also be used to give me blood transfusions if my white count lowers and also to take blood to check my levels. I have to learn to wrap this in plastic wrap around my port to keep it dry when I take a shower (maybe the press and seal will come in handy now that I purchased in bulk from Sam's club and didn't really like using as it bunched up every time I tried to wrap some food.
I started putting together a tote bag filled with everything I possibly could need to get through the treatment weeks based on what my new buddies on the ACS site and blog have suggested. What a great site. I'm sorry we all have to be in it but the camaraderie and caring of individuals who are going through this or already went through this is unbelievable. No matter what emotion I am going through at the time (and trust me the roller coaster of emotion is so profound it is hard to explain) I can go into this site and express it and know there will be quite a few coming on who get me through it with their words and encouragement or advice on how to cope. Then there is the humor. The stories they tell during what might have been a difficult time, sprinkled with humor at the situation. Each area infused me with hope and love and virtual hugs. From them a different hug because they are on the front lines like me and know it from a different personal perspective. From you, who know me, just being there with support and love means a great deal to me. I'm still not quite ready for 'real' hugs yet. My emotional side is so sensitive that I cry at the least little thing. A real hug would unleash more than I could handle right now.
I need to face this in a different way than Richard or the kids are facing it yet I'm not sure how to do that or how I am going to face that. My faith I think will carry me through a major of the times I am alone, facing the treatment or dealing with the effects of it. In between I will heavily depend on the emails and posts and cards and my ACS emails to pull me through plus my family being around me. I'm glad the World Cup is going on right now because I'm sure it is taking some of this insanity off Rich's mind, Justin and Meg have their own space to detach and focus on their lives, even though I know they care and would be here in a heartbeat I'm glad they are away to be able to detach. Brandon still is here and while his girlfriend is supportive and her son keeps his mind occupied, he is still here seeing the brunt of this and hearing what is going on. Just when I think Brandon is not really grasping what is going on, he will do something that makes me realize he does know but is internalizing it all which I'm not sure is good.
He came home from a funeral the other day (his girlfriends grandma) and he hugged me harder than he ever has in his life - he's not a hugger - so this was highly unusually and he was crying. When I consoled him for having to deal with his first funeral and sadness he said it wasn't that, he realized what was going on with me. The look on his face and the sadness and fear in his eyes were enough for me to push through this whole treatment program. It is my 'raison d'etre' right now to forge ahead and push ahead. Simply that look on my son's face.
I don't know how to face Harvey right now. I want to believe that I am strong enough to get through this but at the same time I'm scared of it. From what I have read and heard from others, once you have cancer, it hangs over you like an albatross - even when Harvey is gone and toast, there is a chance he will come back...there is a chance the radiation will create a new different type of cancer later on. You are left with scars that go way beyond the physical. From what I gather, the best way to beat cancer is to LIVE each day regardless of it. And that I am trying to do but it is not easy.
Next post will be after the 'simulation' on Friday where they retro-fit me so to speak for the CT that will be zapping me with radiation. Be well, Marilyne
The whole treatment program will be 5-7 weeks long. This means I will be going to the U of M every Monday through Friday and meeting with my radiologist every Weds to make sure everything is going okay and meeting with my oncologist as well once a week for her to be sure everything is going okay, having blood drawn---they watch you like a hawk so my initial concern with all these chemicals in my body how will they know if something is amiss? How will I know? They are so on top of it and I have umpteen numbers to call day or night. Amazing. I feel like I have this special lifeline to the medical staff and that gives me peace. While daunting and a bit overwhelming for me to think about all this that will be going on, at the same time, I feel comforted by the fact they are so diligent. How diligent? when I mentioned I had a fever the last two evenings, the chemo doctor called my surgeon (head of this team) and he prescribed prophylactic antibiotics plus take a chest xray and blood work to be sure my white count was good and I wasn't anemic. That's why we were there so long. Thorough. My life is in their hands and they are taking this more seriously than I am. I felt absolutely secure and safe in their hands.
Friday I go through a simulation where they measure everything to pinpoint where radiation will be zapped - assumption is they will do the suspicious nodes first just in case the little spawn are in there of Harvey's and then as time goes on start to give Harvey a piece of their (and my) mind. He's a big sucker so they will need to be very aggressive...which means I will be getting the brunt of it by week 3 or 4 when immunity is lowest and symptoms start to accelerate and appear or get worse. Right at this moment my thought is: "Bring it on" -- remind me of that in the weeks to come when my mantra might change to "oh ^%$#, get me outta here!".
Monday I'm having a 'port' put in - not wine, unfortunately although that would be a nice addition to the chemo and bloodwork. It is a device implanted under the skin of my collarbone where they can infuse the chemo (which will be attached to me in a small container) 24/7 for five days the first week of radiation and the last week of radiation (if my body holds up). It can also be used to give me blood transfusions if my white count lowers and also to take blood to check my levels. I have to learn to wrap this in plastic wrap around my port to keep it dry when I take a shower (maybe the press and seal will come in handy now that I purchased in bulk from Sam's club and didn't really like using as it bunched up every time I tried to wrap some food.
I started putting together a tote bag filled with everything I possibly could need to get through the treatment weeks based on what my new buddies on the ACS site and blog have suggested. What a great site. I'm sorry we all have to be in it but the camaraderie and caring of individuals who are going through this or already went through this is unbelievable. No matter what emotion I am going through at the time (and trust me the roller coaster of emotion is so profound it is hard to explain) I can go into this site and express it and know there will be quite a few coming on who get me through it with their words and encouragement or advice on how to cope. Then there is the humor. The stories they tell during what might have been a difficult time, sprinkled with humor at the situation. Each area infused me with hope and love and virtual hugs. From them a different hug because they are on the front lines like me and know it from a different personal perspective. From you, who know me, just being there with support and love means a great deal to me. I'm still not quite ready for 'real' hugs yet. My emotional side is so sensitive that I cry at the least little thing. A real hug would unleash more than I could handle right now.
I need to face this in a different way than Richard or the kids are facing it yet I'm not sure how to do that or how I am going to face that. My faith I think will carry me through a major of the times I am alone, facing the treatment or dealing with the effects of it. In between I will heavily depend on the emails and posts and cards and my ACS emails to pull me through plus my family being around me. I'm glad the World Cup is going on right now because I'm sure it is taking some of this insanity off Rich's mind, Justin and Meg have their own space to detach and focus on their lives, even though I know they care and would be here in a heartbeat I'm glad they are away to be able to detach. Brandon still is here and while his girlfriend is supportive and her son keeps his mind occupied, he is still here seeing the brunt of this and hearing what is going on. Just when I think Brandon is not really grasping what is going on, he will do something that makes me realize he does know but is internalizing it all which I'm not sure is good.
He came home from a funeral the other day (his girlfriends grandma) and he hugged me harder than he ever has in his life - he's not a hugger - so this was highly unusually and he was crying. When I consoled him for having to deal with his first funeral and sadness he said it wasn't that, he realized what was going on with me. The look on his face and the sadness and fear in his eyes were enough for me to push through this whole treatment program. It is my 'raison d'etre' right now to forge ahead and push ahead. Simply that look on my son's face.
I don't know how to face Harvey right now. I want to believe that I am strong enough to get through this but at the same time I'm scared of it. From what I have read and heard from others, once you have cancer, it hangs over you like an albatross - even when Harvey is gone and toast, there is a chance he will come back...there is a chance the radiation will create a new different type of cancer later on. You are left with scars that go way beyond the physical. From what I gather, the best way to beat cancer is to LIVE each day regardless of it. And that I am trying to do but it is not easy.
Next post will be after the 'simulation' on Friday where they retro-fit me so to speak for the CT that will be zapping me with radiation. Be well, Marilyne
Tuesday, June 15, 2010
June 15, 2010
Today I decided was my new birthday. Okay, my second birthday from my real one. Because today I was officially diagnosed with Stage IIIa cancer or T3N1M0. T means the size of the tumor and I was staged at 3 because Harvey (I named the ugly sucker) is over 5cm. Had he stayed at 3cm or so, I would have been staged a II. Node involvement appeared to be less on the PET than MRI so they decided by the looks of the scans there was little or no involvement and put me at a N1. Possibly one or two specks in there but maybe not. The M0 is my favorite one. Means no mets to anywhere in my body and believe me they looked everywhere. While a Stage IIIa sounds ominous, for me, it was good news. It gives me a fighting chance.
Had all my tests done over three days last week and results were in the computer when I met with the radiologist/oncologist. My one hour appt turned into two hours and I had so many questions answered and so much information given to me. They are very thorough. My regular doctor (the jersey guy) met with his team and they posed this plan for me for treatment. I will be getting 30-33 zaps of radiation and chemotherapy in between. A grueling cocktail but if it gets rid of Harvey and any of his microscopic spawn floating in a few of the lymph nodes, then I will deal with the side effects. Plus they are big on pain killers and while I'm not, the doctor told me to put aside any of my thinking that I will get through this on Tylenol - take the meds given and it will be easier on you. So I will listen. However, if I start acting like Hugh Laury on House, someone send me to treatment.
I have to go tomorrow to see the oncologist because I was late for that appt because the radiologist had me too long. So I see her tomorrow and hear about the chemo side of the cocktail. Too bad Tequila wasn't part of the treatment. When I meet her I will hear her side of the story. Then Friday I have to go back to radiology and be fitted with this body thing in a CT machine and marked and noted so the physicists can calculate where to exactly point the rads at my body. Interesting. I'm to expect a lot of different side effects from both treatments and I have them marked down. If I experience them I have ammunition to deal with them (cream, drugs, anti-nausea drugs, more drugs and maybe a drug or two for good measure). If I do not experience the worst, then I will be thankful and make a quilt that day. I have no where to go, nothing to do that is pressing for the next few months so that will be when I push to heal and get through treatment.
Thanks for being there and for reading this blog. Today a great weight lifted off my shoulders knowing the cancer had not spread. That was my greatest fear. Thanks for all your prayers because I know they markedly helped. Be Well, Marilyne
Had all my tests done over three days last week and results were in the computer when I met with the radiologist/oncologist. My one hour appt turned into two hours and I had so many questions answered and so much information given to me. They are very thorough. My regular doctor (the jersey guy) met with his team and they posed this plan for me for treatment. I will be getting 30-33 zaps of radiation and chemotherapy in between. A grueling cocktail but if it gets rid of Harvey and any of his microscopic spawn floating in a few of the lymph nodes, then I will deal with the side effects. Plus they are big on pain killers and while I'm not, the doctor told me to put aside any of my thinking that I will get through this on Tylenol - take the meds given and it will be easier on you. So I will listen. However, if I start acting like Hugh Laury on House, someone send me to treatment.
I have to go tomorrow to see the oncologist because I was late for that appt because the radiologist had me too long. So I see her tomorrow and hear about the chemo side of the cocktail. Too bad Tequila wasn't part of the treatment. When I meet her I will hear her side of the story. Then Friday I have to go back to radiology and be fitted with this body thing in a CT machine and marked and noted so the physicists can calculate where to exactly point the rads at my body. Interesting. I'm to expect a lot of different side effects from both treatments and I have them marked down. If I experience them I have ammunition to deal with them (cream, drugs, anti-nausea drugs, more drugs and maybe a drug or two for good measure). If I do not experience the worst, then I will be thankful and make a quilt that day. I have no where to go, nothing to do that is pressing for the next few months so that will be when I push to heal and get through treatment.
Thanks for being there and for reading this blog. Today a great weight lifted off my shoulders knowing the cancer had not spread. That was my greatest fear. Thanks for all your prayers because I know they markedly helped. Be Well, Marilyne
Monday, June 7, 2010
June 7, 2010
Well, the roller coaster ride has started and I got on even though I hate heights - speed is okay, but heights and then major drops kind of unnerve me - but with this ride I have to expect that and will get on anyway. My mantra years ago used to be 'feel the fear and do it anyway' and I'm not about to stop now.
Today there was a whirlwind of activity and phone calls from all the areas of the U of M. My U of M doctor absolutely ROCKS!!! I have over the days of June 9 through 11 - a PET scan, an MRI-3 (new kind of MRI only U of M and Mayo have - should I feel special?), a CAT scan and a pelvic ultrasound. I'm tired already and I have not even left the house but I still feel a strong confidence with all this going on or perhaps the tranquilizers and antidepressants have kicked in. :-)
Then on the 15th I have a meeting with my radiologist/oncologist - a female which I think is awesome because I like female docs too! (I'm certain I will be getting the Dr. Nigro Radiology/Chemo cocktail which is fine with me from what I've read about it) and hopefully she will stage me and also tell me what the prognosis/treatment plan will be. So, that is what I have for now. I will come back in here after my meeting on the 15th. Pray that the news is positive, that the cancer has not spread or if it has, has not spread far.
According to my journal (yes, I keep journals, have done so since I was 16 although I do not write in there every day, just during traumatic times and I think this constitutes as such)...but I digress...according to my journal I have been trying to get 'diagnosed' since last August with this issue. But...because I had had the requisite colonoscopy, no one thought it was a bad thing. If your 'gut' is telling you one thing and your doctor is telling you another, be more aggressive than I was. Not everything or every symptom or diagnosis is 'by the book' and if you feel there is something wrong, push for a better diagnosis. I learned that the hard way. Now I'm taking charge of everything, have my big purple polka dot sachel filled with my notebook, notes, medical cards and printed out copies from medical journals to ask questions. I'm not one to sit back and let everything just happen but want to be actively involved...and that is exactly what I will be doing.
Don't think that I'm being this stoic strong person...I have my moments. I fall apart one minute, then I get pissed off the next and the next I'm just sitting here looking outside at the flowers thinking what the hell? But I appreciate your support and your love and your prayers. Thank you from the bottom of my heart. Marilyne
Today there was a whirlwind of activity and phone calls from all the areas of the U of M. My U of M doctor absolutely ROCKS!!! I have over the days of June 9 through 11 - a PET scan, an MRI-3 (new kind of MRI only U of M and Mayo have - should I feel special?), a CAT scan and a pelvic ultrasound. I'm tired already and I have not even left the house but I still feel a strong confidence with all this going on or perhaps the tranquilizers and antidepressants have kicked in. :-)
Then on the 15th I have a meeting with my radiologist/oncologist - a female which I think is awesome because I like female docs too! (I'm certain I will be getting the Dr. Nigro Radiology/Chemo cocktail which is fine with me from what I've read about it) and hopefully she will stage me and also tell me what the prognosis/treatment plan will be. So, that is what I have for now. I will come back in here after my meeting on the 15th. Pray that the news is positive, that the cancer has not spread or if it has, has not spread far.
According to my journal (yes, I keep journals, have done so since I was 16 although I do not write in there every day, just during traumatic times and I think this constitutes as such)...but I digress...according to my journal I have been trying to get 'diagnosed' since last August with this issue. But...because I had had the requisite colonoscopy, no one thought it was a bad thing. If your 'gut' is telling you one thing and your doctor is telling you another, be more aggressive than I was. Not everything or every symptom or diagnosis is 'by the book' and if you feel there is something wrong, push for a better diagnosis. I learned that the hard way. Now I'm taking charge of everything, have my big purple polka dot sachel filled with my notebook, notes, medical cards and printed out copies from medical journals to ask questions. I'm not one to sit back and let everything just happen but want to be actively involved...and that is exactly what I will be doing.
Don't think that I'm being this stoic strong person...I have my moments. I fall apart one minute, then I get pissed off the next and the next I'm just sitting here looking outside at the flowers thinking what the hell? But I appreciate your support and your love and your prayers. Thank you from the bottom of my heart. Marilyne
Sunday, June 6, 2010
The Journey Begins
On May 21st I had what I thought would be some simple surgery and minor repair work. The symptoms experienced over the last 8 months pointed to another prolapse or digestive issues. The doctor was not concerned because a colonoscopy was done 2 and 1/2 years before and while a benign polyp was found then, not other issues arose. I was initially sent to a colo-rectal surgeon who diagnosed and concurred with my family physican - if diet did not change symptoms, I was to have some minor surgery. Needless to say a few months and more visits, checkups and even a small scope showed nothing more than the minor issues. Surgery was scheduled and because I mentioned something about pressure, the surgeon looked a bit further in the surgery and found a suspicious mass. He had it biopsied and it came back positive for squamous cell cancer. While I always wanted to look like Farrah Faucett, I did not want to end up with the same dreaded disease she had...I honestly only wanted her blond hair!
Fast forward to having my family physican hook me up with two new surgeons who would further diagnose (the initial surgeon was a general surgeon not a specialist but he knew enough to remove and biopsy what he saw and then stop) and perhaps give me a plan of treatment. For now the road moved from minor surgery and recovery to minor surgery, cancer diagnosis and more roads ahead.
The first doctor I was to see (I was shopping around) was at the University of Minnesota. My family doctor thought it was too far for me to drive but since my brother and my only sibling (who has multiple myeloma ) attends U Penn a teaching hospital for his cancer, I thought it was best to keep everything in one place with a team of doctors but I was not about to make any major decisions on this. After all, the group will have my life in their hands.
The hospital was daunting, large as the U of M campus is huge -- ironically when I did my undergrad I went to Augsburg which lay side to side with part of the campus...life has a way of going around in circles I believe and this is one major circle...plus I do not believe in coincidences...never have. I believe everything happens for a reason and while we do not understand at the time what that reason is, it becomes clearer and clearer if we open our hearts and minds to it. Nothing in my life has happened by coincidence. Not the friends I have made, not the move to Minnesota, not the jobs I have found, not the degrees I was able to attain, not the diagnosis that was given and not even the hospitals that were chosen for me to check out.
I find myself praying a lot...always did, all my life. While I do not sit and read the bible and pray nor do I go to church a lot, I do pray...sometimes it is just to say thanks for small things, like my sons coming home safe from school or a trip, my husband's health improving, to pray for a friend or family member who is ill or needs hope, to thank Him for the flowers that bloom every year in my garden (you would understand this one if you knew what a horrible gardener I am) and just for blessing me all my life. Now I find myself praying simply for guidance and help. Point me in the direction I need to go and I will follow.
When I walked into the U of M waiting room, the first person who greeted me was a sweet African American man with a crooked smile and dimple in his chin. He guided me carefully as to what I needed to fill out, what I had and to take a seat. He made me feel comfortable. Then the first nurse that came in (who I nicknamed McGuyver) - a young Asian girl with round face and exuded so much sensitivity found information I could not and added it to my chart (the colonoscopy info for example). Finally a young doctor came in (female) who had 7 years of surgeries already - she did not look more than 29 herself who asked questions and listened intently. When my actual surgeon and specialist walked in, he was my age, kind eyes and listening heart. He asked me some questions and then when I mentioned a few of my fears and some of the extra symptoms he sent Rich out so he could check me out. I got to watch what he was doing on the screen and he pointed out the healthy from unhealthy tissue. Then he showed me on the chart. The 'sample' the other surgeon removed (he thought he got 95% of it) was only the tip of the iceberg. My doctor Dr. D, felt there was more there and wanted to see every scan, record and slide there was before committing to a diagnosis. He thought it might be squamous cell but he felt something else was going on that was unusual. With every passing second being in there with him my confidence level rose. My anxiety level lowered. It 'felt' right to be there regardless of the end diagnosis. I did not ask God to give me a sign but He gave me a few anyway.
First, the doctor asked me about my accent and where I was from and I said originally from Jersey and he laughed and said well, I knew it. I went to school in Jersey and I thought he was going to tell me it was the University of Medicine and Dentistry in Newark but he went to Princeton! I felt like a proud Jewish mother at that point. Wow. Princeton. He has to be pretty smart...and then we talked about possible treatment depending on whether he concurred with the other pathologist (his team would be looking at my case first) but he said that more than likely I would be going through a few scans (CAT, PET, special MRI they only do there and blood tests) before treatment begins and the treatment would more than likely be a Radiation/Chemo mix.
Now I had done a lot of reading prior to this and one thing that kept coming up was the Dr. Nigro treatment/protocol that had become popular over the years to spare patients from colostomy bags and losing everthing else (but for me if I have my life I can deal with anything) -- this treatment used to be given to lab rats first before surgery was performed and it was found that the treatment alleviated the need for surgery because it got rid of the tumors and cancer totally. So I was curious about whether or not this was the treatment plan he would be looking at. Sure enough when he said rad/chemo mix per Dr. Nigro's protocol I jumped up and said I read about him, I'm so glad you are thinking of using his protocol. And he said, not only is he using his protocol but he KNEW the man, who just recently died (hopefully not from colon cancer I added and my doctor smiled and said no) but he also attended his seminars and worked with him for awhile. When I looked up at the ceiling at that point, God knew I was saying that small thank you again for watching over me. I left there feeling confident in my future care.
Now that is where I am at this point. I do not know the staging, I do not know if Dr. R will concur with the other doctors or pathologist, I do not know for sure what I have or if it has spread or what is going on. For now I am in limbo waiting for scheduled testing and possible diagnosis. I did purchase a Reiki healing tape and listen to it while I type these words in my blog. Whether anyone reads this or not is not important, what it important is I am able to express my fears, my hopes, my experiences. I think everyone going through this should have the opportunity to do so and if I can be here for someone else going through this, I will gladly be there.
So, I am signing off now until I hear further. Be well. Marilyne
Fast forward to having my family physican hook me up with two new surgeons who would further diagnose (the initial surgeon was a general surgeon not a specialist but he knew enough to remove and biopsy what he saw and then stop) and perhaps give me a plan of treatment. For now the road moved from minor surgery and recovery to minor surgery, cancer diagnosis and more roads ahead.
The first doctor I was to see (I was shopping around) was at the University of Minnesota. My family doctor thought it was too far for me to drive but since my brother and my only sibling (who has multiple myeloma ) attends U Penn a teaching hospital for his cancer, I thought it was best to keep everything in one place with a team of doctors but I was not about to make any major decisions on this. After all, the group will have my life in their hands.
The hospital was daunting, large as the U of M campus is huge -- ironically when I did my undergrad I went to Augsburg which lay side to side with part of the campus...life has a way of going around in circles I believe and this is one major circle...plus I do not believe in coincidences...never have. I believe everything happens for a reason and while we do not understand at the time what that reason is, it becomes clearer and clearer if we open our hearts and minds to it. Nothing in my life has happened by coincidence. Not the friends I have made, not the move to Minnesota, not the jobs I have found, not the degrees I was able to attain, not the diagnosis that was given and not even the hospitals that were chosen for me to check out.
I find myself praying a lot...always did, all my life. While I do not sit and read the bible and pray nor do I go to church a lot, I do pray...sometimes it is just to say thanks for small things, like my sons coming home safe from school or a trip, my husband's health improving, to pray for a friend or family member who is ill or needs hope, to thank Him for the flowers that bloom every year in my garden (you would understand this one if you knew what a horrible gardener I am) and just for blessing me all my life. Now I find myself praying simply for guidance and help. Point me in the direction I need to go and I will follow.
When I walked into the U of M waiting room, the first person who greeted me was a sweet African American man with a crooked smile and dimple in his chin. He guided me carefully as to what I needed to fill out, what I had and to take a seat. He made me feel comfortable. Then the first nurse that came in (who I nicknamed McGuyver) - a young Asian girl with round face and exuded so much sensitivity found information I could not and added it to my chart (the colonoscopy info for example). Finally a young doctor came in (female) who had 7 years of surgeries already - she did not look more than 29 herself who asked questions and listened intently. When my actual surgeon and specialist walked in, he was my age, kind eyes and listening heart. He asked me some questions and then when I mentioned a few of my fears and some of the extra symptoms he sent Rich out so he could check me out. I got to watch what he was doing on the screen and he pointed out the healthy from unhealthy tissue. Then he showed me on the chart. The 'sample' the other surgeon removed (he thought he got 95% of it) was only the tip of the iceberg. My doctor Dr. D, felt there was more there and wanted to see every scan, record and slide there was before committing to a diagnosis. He thought it might be squamous cell but he felt something else was going on that was unusual. With every passing second being in there with him my confidence level rose. My anxiety level lowered. It 'felt' right to be there regardless of the end diagnosis. I did not ask God to give me a sign but He gave me a few anyway.
First, the doctor asked me about my accent and where I was from and I said originally from Jersey and he laughed and said well, I knew it. I went to school in Jersey and I thought he was going to tell me it was the University of Medicine and Dentistry in Newark but he went to Princeton! I felt like a proud Jewish mother at that point. Wow. Princeton. He has to be pretty smart...and then we talked about possible treatment depending on whether he concurred with the other pathologist (his team would be looking at my case first) but he said that more than likely I would be going through a few scans (CAT, PET, special MRI they only do there and blood tests) before treatment begins and the treatment would more than likely be a Radiation/Chemo mix.
Now I had done a lot of reading prior to this and one thing that kept coming up was the Dr. Nigro treatment/protocol that had become popular over the years to spare patients from colostomy bags and losing everthing else (but for me if I have my life I can deal with anything) -- this treatment used to be given to lab rats first before surgery was performed and it was found that the treatment alleviated the need for surgery because it got rid of the tumors and cancer totally. So I was curious about whether or not this was the treatment plan he would be looking at. Sure enough when he said rad/chemo mix per Dr. Nigro's protocol I jumped up and said I read about him, I'm so glad you are thinking of using his protocol. And he said, not only is he using his protocol but he KNEW the man, who just recently died (hopefully not from colon cancer I added and my doctor smiled and said no) but he also attended his seminars and worked with him for awhile. When I looked up at the ceiling at that point, God knew I was saying that small thank you again for watching over me. I left there feeling confident in my future care.
Now that is where I am at this point. I do not know the staging, I do not know if Dr. R will concur with the other doctors or pathologist, I do not know for sure what I have or if it has spread or what is going on. For now I am in limbo waiting for scheduled testing and possible diagnosis. I did purchase a Reiki healing tape and listen to it while I type these words in my blog. Whether anyone reads this or not is not important, what it important is I am able to express my fears, my hopes, my experiences. I think everyone going through this should have the opportunity to do so and if I can be here for someone else going through this, I will gladly be there.
So, I am signing off now until I hear further. Be well. Marilyne
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