Friday, May 29, 2009
Legislation
It makes me so angry that for the past few years I have been complaining of small symptoms but was told a mammogram would do nothing as I'm too young. And so nothing else was done, but told don't worry about it, I'm young! Pointless redundancies! Well, like so many stories I see, I found a lump during a self exam and insisted in a doctor appt. the next day. That began my rollercoaster at age 39. I was diagnosed just weeks ago with Stage 3 aggressive breast cancer that has already spread. My surgeon commended me on my persistence to be taken seriously. I have 2 very young children and a life ahead of me that I'm not done with. I'm so encouraged to know that there is someone in government speaking up for all of us who are still not being heard! Doctors and insurance companies must be on board with this cause. If it’s about money which it always is, the insurance companies must realize they’d put out fewer dollars with prevention and education than into all the treatment dollars spent on people like me who by the time we’re diagnosed, need aggressive care.
Please read Congresswoman Debbie Wasserman Schultz's attempts to push legislation based on her personal struggle.
Thursday, May 28, 2009
Laughter....
Today at soccer practice..smiles and laughter after being at the hospital all day....watching my sons play and just be kids.
That's what it's all for....
Meeting with the surgeon
Today was the big day...meeting with the surgeon for the first time to go over everything so far and get a game plan together. Things have been moving fast, and now the pace is picking up! I suppose it's good. I don't have enough time in between things to build up fear. Like waiting in line for that terrifying roller coaster and not looking up until it's time to get on.
I like my surgeon very much. I liked her within 30 seconds. She's a straight shooter. She's positive. She cares. And she's kick ass with an attitude to match. Just what I need. A good match. I size people up pretty fast. I like her team as well. They're putting me first in line...not messing around. I'm in the right place.
I have allot to do now ....again. More tests now to get ready for surgery. And...
CHEMO.
I go into surgery June 10th to get my CVC (central venous catheter). This is like a permanent IV into my chest. This will be for my chemo or any blood work they need. My veins won't hold up to the frequency of chemotherapy treatments, so this avoids needing to find new veins for an IV every 3 weeks for a year. Sound like fun so far? I can't wait!
As soon as I get my CVC, I can start chemo right away. After about 6 treatments, I will go in for surgery to remove my lymph nodes, my tumor and possibly my breast depending upon how I respond to chemo. I am at a very high risk for recurrence, so mastectomy is in the picture as a very real possibility. Difficult decisions to come. But without having even started, I know chemo will have to be a one ticket ride in my case.
So here we go.
Time to get real sick to get better.
Time to loose all my hair.
Time to ask for more help.
Time to be strong.
Time to survive.
It rained today...my garden can begin to grow now.
I like my surgeon very much. I liked her within 30 seconds. She's a straight shooter. She's positive. She cares. And she's kick ass with an attitude to match. Just what I need. A good match. I size people up pretty fast. I like her team as well. They're putting me first in line...not messing around. I'm in the right place.
I have allot to do now ....again. More tests now to get ready for surgery. And...
CHEMO.
I go into surgery June 10th to get my CVC (central venous catheter). This is like a permanent IV into my chest. This will be for my chemo or any blood work they need. My veins won't hold up to the frequency of chemotherapy treatments, so this avoids needing to find new veins for an IV every 3 weeks for a year. Sound like fun so far? I can't wait!
As soon as I get my CVC, I can start chemo right away. After about 6 treatments, I will go in for surgery to remove my lymph nodes, my tumor and possibly my breast depending upon how I respond to chemo. I am at a very high risk for recurrence, so mastectomy is in the picture as a very real possibility. Difficult decisions to come. But without having even started, I know chemo will have to be a one ticket ride in my case.
So here we go.
Time to get real sick to get better.
Time to loose all my hair.
Time to ask for more help.
Time to be strong.
Time to survive.
It rained today...my garden can begin to grow now.
Wednesday, May 27, 2009
Some good news...
Got the early call this morning from my oncology nurse....some good news. My tests yesterday were negative...no further spread to my organs or other parts of my body so far.
We go to see my surgeon tomorrow. Game plan time.
We go to see my surgeon tomorrow. Game plan time.
Tuesday, May 26, 2009
Today, I had my CAT scan of my torso. Had to get Iodine pushed (IV) for that. It actually burns! Once they put it in the IV, it feels like all your organs and blood vessels have acid (not the fun kind) in them. Ouch. I guess the Iodine makes my internal organs look prettier for the camera! And I had to lay very very still and hold my breath several times every time it scanned. Didn't know there was going to be heavy breathing involved or I might have video recorded the event!
I had to take, or drink I should say alot of contrast medication the day of and day before. Yum , just like water should taste after your kid puts chalk in it! My husband added juice, but it's just not the same as...vodka and juice... Maybe we'll do that tomorrow.
The CAT scan was in the morning. Then when I was done with that, someone else came along and injected some other things into my veins for the next one. I had to wait 3 hours and then come back for my bone scan. Since we were 45 minutes from home, we had to kill time. All the medications made me feel wasted so I didn't really feel like, "shopping or going for a movie", so we ate brunch and wasted time hanging out in the car and in COSTCO. It was nice to "pretend" to test out the comfy leather couch display while my kids amused themselves looking at books and movies and my husband shopped for all the groceries we'd need for the future extended cocooning time at home.
I got to lay down again on a very thin uncomfortable board and have another machine slowly scan my entire body. This was my bone scan. The scanner moved so slowly I could barely tell it was moving down my body. Again I could not move or fidget for 30 minutes. You try that after laying down on cement! Amazingly very tiring. Of course the moment they say you can't move, your nose itches like crazy the entire time!
Between all the medications I was on, oh and I had to take steroids and Diphenhydramine because I'm allergic to the Iodine they shot me up with, I was beat by the end of the day. An all day affair this time. The boys were troopers. We made sure to provide books and electronic entertainment, but that only lasts so long.
Won't know more just yet. Hurry up and wait again. I guess down the road I'll be getting more of these very fun expensive portraits done of my insides.
I had to take, or drink I should say alot of contrast medication the day of and day before. Yum , just like water should taste after your kid puts chalk in it! My husband added juice, but it's just not the same as...vodka and juice... Maybe we'll do that tomorrow.
The CAT scan was in the morning. Then when I was done with that, someone else came along and injected some other things into my veins for the next one. I had to wait 3 hours and then come back for my bone scan. Since we were 45 minutes from home, we had to kill time. All the medications made me feel wasted so I didn't really feel like, "shopping or going for a movie", so we ate brunch and wasted time hanging out in the car and in COSTCO. It was nice to "pretend" to test out the comfy leather couch display while my kids amused themselves looking at books and movies and my husband shopped for all the groceries we'd need for the future extended cocooning time at home.
I got to lay down again on a very thin uncomfortable board and have another machine slowly scan my entire body. This was my bone scan. The scanner moved so slowly I could barely tell it was moving down my body. Again I could not move or fidget for 30 minutes. You try that after laying down on cement! Amazingly very tiring. Of course the moment they say you can't move, your nose itches like crazy the entire time!
Between all the medications I was on, oh and I had to take steroids and Diphenhydramine because I'm allergic to the Iodine they shot me up with, I was beat by the end of the day. An all day affair this time. The boys were troopers. We made sure to provide books and electronic entertainment, but that only lasts so long.
Won't know more just yet. Hurry up and wait again. I guess down the road I'll be getting more of these very fun expensive portraits done of my insides.
Monday, May 25, 2009
Happy Anniversary
Today is my 18th wedding anniversary. They say a strong relationship survives these things. I know it will. Toasted my husband with a lovely contrast chalky substance and steroids. I still beat him! Chugged 16 ounces before he got 2 ounces of beer down! Ha! More chugging lovely chalk in the morning then off to the bone scan and CT. Zap It baby!
Sunday, May 24, 2009
Tests, tests...and more tests
Mood: tired
Test results keep rolling in. I am under great care by terrific people and very caring doctors. They know what they are doing and have expedited my care to get all the tests done necessary before I can look at what treatment I need.
Biopsy results show I have a large tumor on my left side, spreading cancer and cancer in my lymph nodes as well. My cancer is stage 3, metastatic cancer with a grade 3 tumor.
My cancer ha spread into the surrounding tissues and lymph system. Grade 3 means that it is rapidly growing.
My MRI results came back also. It confirms my cancer, but it did show that it has not gone to my right side...good news for now in that regard. I am still being advised to get my papers in order. When I say I have young children, the eyes that look at me turn sad with pity.
My HER2neu results are also positive. This test is involved in my prognosis. It looks to see if the cancer cells were invasive carcinoma. Extra protein makes cells grow out of control. If the HER2neu test is “positive” then it means that the cancer cells have too much HER2 receptor protein. The cells are being "fed" and consequently grow and spread. In this case, they will likely recommend biological therapy as part of my treatment. I am still learning what all of this means. I am being handed brochures and booklets. Everything is very technical and cold. I've worked in hospitals and seen medical charts when I was a medical social worker. But now as I am on the other side of the chart, it is all strange to me. When I think I am done with testing, I am being scheduled for more I have never heard of before. I am walking through a big city for the first time. I forgot where I parked, but then my nurse takes my clammy hand into hers and holds on.
On Tuesday, I will go for a Bone Scan and CT. Again they are looking to see how far the cancer has spread. They warn me that as thorough as these tests will be, there is still a chance something can be missed. I am told, it only takes one cancer cell to break away and go somewhere else in my body. So even if the cancer is not revealed in other parts of my body, because of how rapidly it is growing and how late stage my cancer is, I will still likely receive very aggressive treatments. I keep hearing "just in case".
My husband and I meet with the team and surgeon on Thursday with all the results. At this point with the information a game plan for treatment will be put together. I've gone from being a mother and wife, to becoming a patient. A cancer patient. I am unable to wrap my head around this new identity. The halls of the hospital feel like a labyrinth. The waiting room smells like old magazines. I try to joke and smile with the nurses that instruct me in the fashionable ways to tie my hospital gown that is 10 sizes too big. My humor is my saving grace. I try to smile, but when I am alone in the changing room before a test is about to begin, I feel my nerves in the pit of my stomach. Who am I? What am I doing here?
Test results keep rolling in. I am under great care by terrific people and very caring doctors. They know what they are doing and have expedited my care to get all the tests done necessary before I can look at what treatment I need.
Biopsy results show I have a large tumor on my left side, spreading cancer and cancer in my lymph nodes as well. My cancer is stage 3, metastatic cancer with a grade 3 tumor.
My cancer ha spread into the surrounding tissues and lymph system. Grade 3 means that it is rapidly growing.
My MRI results came back also. It confirms my cancer, but it did show that it has not gone to my right side...good news for now in that regard. I am still being advised to get my papers in order. When I say I have young children, the eyes that look at me turn sad with pity.
My HER2neu results are also positive. This test is involved in my prognosis. It looks to see if the cancer cells were invasive carcinoma. Extra protein makes cells grow out of control. If the HER2neu test is “positive” then it means that the cancer cells have too much HER2 receptor protein. The cells are being "fed" and consequently grow and spread. In this case, they will likely recommend biological therapy as part of my treatment. I am still learning what all of this means. I am being handed brochures and booklets. Everything is very technical and cold. I've worked in hospitals and seen medical charts when I was a medical social worker. But now as I am on the other side of the chart, it is all strange to me. When I think I am done with testing, I am being scheduled for more I have never heard of before. I am walking through a big city for the first time. I forgot where I parked, but then my nurse takes my clammy hand into hers and holds on.
On Tuesday, I will go for a Bone Scan and CT. Again they are looking to see how far the cancer has spread. They warn me that as thorough as these tests will be, there is still a chance something can be missed. I am told, it only takes one cancer cell to break away and go somewhere else in my body. So even if the cancer is not revealed in other parts of my body, because of how rapidly it is growing and how late stage my cancer is, I will still likely receive very aggressive treatments. I keep hearing "just in case".
My husband and I meet with the team and surgeon on Thursday with all the results. At this point with the information a game plan for treatment will be put together. I've gone from being a mother and wife, to becoming a patient. A cancer patient. I am unable to wrap my head around this new identity. The halls of the hospital feel like a labyrinth. The waiting room smells like old magazines. I try to joke and smile with the nurses that instruct me in the fashionable ways to tie my hospital gown that is 10 sizes too big. My humor is my saving grace. I try to smile, but when I am alone in the changing room before a test is about to begin, I feel my nerves in the pit of my stomach. Who am I? What am I doing here?
My diagnosis...
Also posted on Pink Ribbon http://apps.facebook.com/pinkribbon/stories?section=vote
3 weeks ago, I went to my doctor with fatigue, pain and a lump I found in my breast. All of a sudden I was thrust into a whirlwind of tests: mammogram, ultrasound, biopsy, MRI, Bone Scan, CT, blood work and so on. Only a week ago I got THE phone call..."Cancer". At 39 with two small children and no family support in the area, I found myself scrambling to deal with all of this. I’ve had pain in my left breast for years, but it was dismissed as many other things. Now, as a healthy, strong woman, I had to find a way to tell my dear husband, family and friends that I’ve been diagnosed with very aggressive breast cancer that has already spread. Naturally everyone has been as shocked as I was, and in a very short time they have all become very supportive. I underwent my tests in secret though. I suppose in some strange way, that would keep the news from becoming real. I did not want to worry anyone until I knew for certain. Funny thing is, before the doctor walked into the room with the sad look on her face, I somehow knew.
My greatest lesson of late has been learning to ask for help and not feeling bad about it. People want to help.
Talking to my children has been the greatest hurdle. I gently give them little bits at a time. I’ve had my moments in these past weeks, but I find myself trying to be positive and upbeat. I just find myself accepting it. Perhaps I am in denial and I will mourn later. I need to so I can move on. There is alot to do in the coming months. I know others with take their cue from me. I need those around me to be strong. Sometimes, dark things can bring people together. It changes us and makes us see what is truly important. Life really is short. We must act on what moves us. The dishes will get done later. I stop what I’m doing to share a good book with my son. I’m strong willed. I will not be changed by this disease. I know I am loved by those who have come to support me. They know I will not be waited on hand and foot or treated with pity, I know they are there to call upon when I need help.
I want to help others find hope and purpose. My purpose is to survive, my hope is from all those that love me. I am ready for the good long fight.
3 weeks ago, I went to my doctor with fatigue, pain and a lump I found in my breast. All of a sudden I was thrust into a whirlwind of tests: mammogram, ultrasound, biopsy, MRI, Bone Scan, CT, blood work and so on. Only a week ago I got THE phone call..."Cancer". At 39 with two small children and no family support in the area, I found myself scrambling to deal with all of this. I’ve had pain in my left breast for years, but it was dismissed as many other things. Now, as a healthy, strong woman, I had to find a way to tell my dear husband, family and friends that I’ve been diagnosed with very aggressive breast cancer that has already spread. Naturally everyone has been as shocked as I was, and in a very short time they have all become very supportive. I underwent my tests in secret though. I suppose in some strange way, that would keep the news from becoming real. I did not want to worry anyone until I knew for certain. Funny thing is, before the doctor walked into the room with the sad look on her face, I somehow knew.
My greatest lesson of late has been learning to ask for help and not feeling bad about it. People want to help.
Talking to my children has been the greatest hurdle. I gently give them little bits at a time. I’ve had my moments in these past weeks, but I find myself trying to be positive and upbeat. I just find myself accepting it. Perhaps I am in denial and I will mourn later. I need to so I can move on. There is alot to do in the coming months. I know others with take their cue from me. I need those around me to be strong. Sometimes, dark things can bring people together. It changes us and makes us see what is truly important. Life really is short. We must act on what moves us. The dishes will get done later. I stop what I’m doing to share a good book with my son. I’m strong willed. I will not be changed by this disease. I know I am loved by those who have come to support me. They know I will not be waited on hand and foot or treated with pity, I know they are there to call upon when I need help.
I want to help others find hope and purpose. My purpose is to survive, my hope is from all those that love me. I am ready for the good long fight.
Each day at a time...
Got the garden planted Friday. I started working on it a few days ago, but didn’t feel up to finishing it then. It has been a tough month so far. I've been so tired for so long. I'm wondering why I am planting my garden this year. I know I won't be able to tend it. It is a bittersweet feeling to get the seeds in the ground, knowing that the weeds will come and quickly choke my efforts of today. I suppose if I do not, then it is symbolic somehow that I am giving in. It is not in my nature to give in, but I do not know where to place my hope at the moment. I do not know what to expect in the coming months, but I can feel the opression looming over my heart. Everyone around me is speaking in medical and technical terms. My ears are numb while my soul is screaming. This can't be happening. It has to be a dream. A bad dream. The days feel like they are in slow motion. I try to take each day one at a time, but the days seem to drag on. I can't help but fear the unknown. I feel like a robot getting through my days, numb and without emotion. I know I need to keep going, even through this part. If I don't move, even when I feel like I can't, I will remain in place. Perhaps, even though I know the weeds will overtake the garden this year, a few unyielding sunflowers will rise above and tempt the birds in the fall.
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