Behind Door Number 1:
A Mammogram!
The basic stand and squish mammogram is usually completely covered by insurance, with no out of pocket expense. It lasts only about 10 minutes, and will detect about 85% of all breast cancers. If you have lobular breast cancer, forget it, because it probably won't show up on a mammogram.
Behind Door Number 2:
An MRI!
The lay and hang MRI may not be completely covered by insurance, so there might be some out of pocket expense. It lasts about 22 minutes, and you must be injected with a dye solution. It will detect 100% of all breast cancers. You got cancer? MRI will show it.
Behind Door Number 3:
Procrastination!
Do you put off your exam, thinking, "No one has breast cancer in my family?" Do you say to yourself, "I can wait one more year." Do you want no out of pocket expenses? This is the door for you?
So what will it be?
Pick door number 2! Pick door number 2! Pick door number 2!
I would rather pay some out of pocket expense and spend and extra 20-30 minutes for an appointment to know with 100% accuracy whether or not I have breast cancer, than to be completely covered by insurance and get a report that is almost sure that breast cancer is not present.
I am still trying to understand why women get mammograms instead of MRIs. Even though my cancer is 3.2cm, about the size of a golf ball, it barely showed up on the mammogram in February. And, the three satellite cancers spots on the left, and the pre-cancer spot on the right did not show up at all on the mammogram. These four spots were detected on a MRI. I wonder if the large cancer tumor was a tiny spec 3 1/2 years ago when I had a mammogram, but was undetected.
I have some theories why we are still subjected to the squishing of the mammogram, vs the lay and hang of the MRI.
1. Insurance - oh, how I detest insurance companies - MRI is more expensive than a mammogram. Don't know why - maybe because the machine is gynormous and more expensive. It also takes about 15 minutes longer.
2. The MRI shows every little detail. If a tiny spec shows up, the radiologist must report it, and then someone must follow up on it. This could lead to a lot more biopsies. As one doctor said, you can have "too much information." What? Maybe too much ice cream, too much sunning, too much work, but never too much information when it comes to your health. Wait, scratch that, never too much ice cream.
3. Not enough MRI machines available, even though the MRI Breast Center at Bev Hospital in Danvers is closed on Fridays because they don't have enough business.
4. Doctors continue to recommend mammograms because that is the way it has always been done. Maybe they are not aware of the difference in detection.
I have learned that you must advocate for yourself! The doctors will not do this for you! I insisted that the right side lesion (detected on the MRI) be biopsied, even though I was told by both my surgeon and radiologist that it was "nothing" and a biopsy was "unnecessary." Guess what? It isn't nothing - it is pre-cancer! Because of this extra information, I am looking at a double mastectomy instead of single.
So ladies...make that appointment for Door Number 1 or Door Number 2!
Whacky thought of the day...
Have you ever tried cleaning the house while listening to opera music? Andrea Bocelli helped me clean that house and I found it quite pleasant and motivating.
Wednesday, March 31, 2010
Saturday, March 27, 2010
Placed My Order...
When I go out to dinner ( on that rare occassion that doesn't involve pizza) I never relax until I place my order. I don't even fully enjoy the conversation until orders are placed because I'm listening with one ear, trying to read the menu without ignoring my companions, and in the meantime making the all important meal decision. Yes, I can multi-task, but dining out is a whole different ball of wax. I have even asked waiters to come back at 3-4 times. I am sure that I made many people feel like a waiter by turning you away, (...recent blog regarding recommendations, suggestions and input overload) I finally placed my order! I had all my tests, I have my team of doctors, know what surgery I am having, where I'm having it, but date is still tbd. I am relaxed and ready to enjoy this unusual meal together. So let's talk cancer, or not. I can't wait for dessert - I'll have one of each with lots of spoons!
Have you ever eaten dinner on a seasaw?
Whacky thought of the day...
What is the difference between an auto mechanic and a surgeon?
Clean hands
(No disrespect meant to either auto mechanics nor surgeons.)
Have you ever eaten dinner on a seasaw?
Whacky thought of the day...
What is the difference between an auto mechanic and a surgeon?
Clean hands
(No disrespect meant to either auto mechanics nor surgeons.)
Tuesday, March 23, 2010
Downhill is Harder...
If you have ever been backpacking, you know that walking with a loaded backpack downhill is much harder than trekking uphill. This doesn't make sense, and it's really quite a bummer when you reach the top of the mountain, thinking that the descent into the lake is going to be easy, but discover that it is even harder. I just carried my cancer to the top of the mountain, and am beginning my descent.
The discovery, the tests, and the myriad of doctors were my uphill climb. The final decisions regarding surgery and reconstruction are the descent. Oh yeh, and then there's that chemo thing.
Today Justin and I met with my local surgeon, Dr. No Nickname. Yes, we are going to Mass General for a second opinion, but I wanted to get the results from the MRI biopsy and hear her options for the operation. I learned that the MRI biopsy of the right side - noncancerous side - came back not cancerous, BUT not good either. The lesion needs to be removed. Now I have the weight of the big, really BIG decisions to consider. What type of surgery do I want, and do I want reconstruction or do I want to wear falsies - not the technical term. I can just see it now - I'll be bodysurfing a wave, get thrown around and lose my boob in the surf. Some kids get to look for shells or sea glass, but mine will be searching for their mom's left breast.
She gave me three options:
Option 1. Step A. Complete mastectomy on the left. Step B. Chemotherapy Step C. Complete mastectomy on the right and reconstruct both during the second surgery.
Option 2. Remove both and reconstruct both at the same time
Option 3. Step A. Remove left and part of right. Step B. Reconstruction operation at another time, or no reconstruction at all
I told Dr. No Nickname that I thought it wise to get a second opinion. She was good with this decision. She knows of Dr. Top Dog at Mass General that I am seeing on April 15.
Another element was thrown into the equation today. If I decided to stay with Dr. No Nickname, she is going on maternity leave around the third week in April. What? She can't be pregnant! She had triplets (3 boys) in January - she looks amazing-no belly and no bags under the eyes! Does this sound familiar Super Mom? She is still going to work part-time. If I have complications, I think it might be better to have someone that is full-time.
I am very thankful that I have so many people who are thinking about me and are expressing their concerns and desire to help! I appreciate all the suggestions and recommendations.
The other part of the descent that is weighing heavily on me - I don't know how to say this without sounding unappreciative and bitchy - is that it is difficult when so many people call or stop me "on the street" to get updated on my progress; this is why I began the blog in the first place. I just didn't think that I could talk about my breast cancer over and over and over, and I was right. But I guess many can't get into the blog thing - I can totally understand -I barely have time to check my e-mail, let alone someone's ramblings about her cancer. Unfortunately, for me, retelling my progress/process is strangely exhausting. But, why am I telling you this?! You are actually reading this and know what's going on! How goofy.
The last weight in this cancer backpack- and I don't know how to put this either -is the barrage of outside input. As I mentioned above, suggestions and recommendations are welcomed and appreciated, but in the form of an e-mail is best at this point. I feel bad when I don't follow up on all the phone calls, suggestions and recommendations- it's not that I don't value all of them; it just has become overwhelming. Justin and I have reached the top of the mountain, and we feel pretty good about the path we mapped down to the lake. I know that those who have taken the breast cancer jouney can probably describe this unexpected feeling and energy drain more eloquently than I.
Whacky thought for the day...
If doing something the same way over and over but expecting different results is the definition of insanity...how many of us have been insane at least once in our life?
Happy Day-After-Your-Birthday Mully! (Sorry I'm a day late, but I didn't write yesterday.)
The discovery, the tests, and the myriad of doctors were my uphill climb. The final decisions regarding surgery and reconstruction are the descent. Oh yeh, and then there's that chemo thing.
Today Justin and I met with my local surgeon, Dr. No Nickname. Yes, we are going to Mass General for a second opinion, but I wanted to get the results from the MRI biopsy and hear her options for the operation. I learned that the MRI biopsy of the right side - noncancerous side - came back not cancerous, BUT not good either. The lesion needs to be removed. Now I have the weight of the big, really BIG decisions to consider. What type of surgery do I want, and do I want reconstruction or do I want to wear falsies - not the technical term. I can just see it now - I'll be bodysurfing a wave, get thrown around and lose my boob in the surf. Some kids get to look for shells or sea glass, but mine will be searching for their mom's left breast.
She gave me three options:
Option 1. Step A. Complete mastectomy on the left. Step B. Chemotherapy Step C. Complete mastectomy on the right and reconstruct both during the second surgery.
Option 2. Remove both and reconstruct both at the same time
Option 3. Step A. Remove left and part of right. Step B. Reconstruction operation at another time, or no reconstruction at all
I told Dr. No Nickname that I thought it wise to get a second opinion. She was good with this decision. She knows of Dr. Top Dog at Mass General that I am seeing on April 15.
Another element was thrown into the equation today. If I decided to stay with Dr. No Nickname, she is going on maternity leave around the third week in April. What? She can't be pregnant! She had triplets (3 boys) in January - she looks amazing-no belly and no bags under the eyes! Does this sound familiar Super Mom? She is still going to work part-time. If I have complications, I think it might be better to have someone that is full-time.
I am very thankful that I have so many people who are thinking about me and are expressing their concerns and desire to help! I appreciate all the suggestions and recommendations.
The other part of the descent that is weighing heavily on me - I don't know how to say this without sounding unappreciative and bitchy - is that it is difficult when so many people call or stop me "on the street" to get updated on my progress; this is why I began the blog in the first place. I just didn't think that I could talk about my breast cancer over and over and over, and I was right. But I guess many can't get into the blog thing - I can totally understand -I barely have time to check my e-mail, let alone someone's ramblings about her cancer. Unfortunately, for me, retelling my progress/process is strangely exhausting. But, why am I telling you this?! You are actually reading this and know what's going on! How goofy.
The last weight in this cancer backpack- and I don't know how to put this either -is the barrage of outside input. As I mentioned above, suggestions and recommendations are welcomed and appreciated, but in the form of an e-mail is best at this point. I feel bad when I don't follow up on all the phone calls, suggestions and recommendations- it's not that I don't value all of them; it just has become overwhelming. Justin and I have reached the top of the mountain, and we feel pretty good about the path we mapped down to the lake. I know that those who have taken the breast cancer jouney can probably describe this unexpected feeling and energy drain more eloquently than I.
Whacky thought for the day...
If doing something the same way over and over but expecting different results is the definition of insanity...how many of us have been insane at least once in our life?
Happy Day-After-Your-Birthday Mully! (Sorry I'm a day late, but I didn't write yesterday.)
Sunday, March 21, 2010
The Books...
I have avoided all books, pamphletts or handouts regarding breast cancer. The facts Mam, just the facts are all I am interested in reading. I can completely understand if someone is an emotional wreck after they are diagosed with cancer, and pray that they can find help and support. However, a book like the one I skimmed through today would make someone a worse wreck.
After church today, I started to read a book about coping with breast cancer. The forward by Evelyn Lauder,of Estee Lauder, was interesting. I'm glad that I use Estee Lauder products because Evelyn Lauder is a HUGE supporter of breast cancer research. She founded the Breast Cancer Research Foundation. Her goal is to raise enough money, and become so successful that it puts them - the BCRF - out of business. I like this attitude. After the forward, I am finding the content questionable.
The book was written by two successful, professional women. One is childless and completely self absorbed. It is enough to make you puke. At one point she writes, "Instead of fighting to get on the list for the latest Chanel bag, I was gearing up for the fight of my life." Really, this is a direct quote from the book! How melodramatic can one be? She sounds like a character on a soap opera. Did she steal this line from a harlequin book?
The beginning ot the book goes on and on about their thoughts of death and dying. The other author, who is a mother of two, writes about thoughts of leaving her two children motherless. I can honestly say that I have not had these thoughts. This is not an option. Is it assumed that all women think of death when they are diagnosed with breast cancer? These are professional women - shouldn't they know that the majority of women survive breast cancer if it hasn't spread to the rest of their body? Melodramatic women are embarassing to those of us (women) with a grip. But damn it, they planted this ugly seed, but I refuse to water and fertilize it. See, this is why no one should read these stupid books!
Needless to say, I skipped several pages, especially when the self-absorbed woman was writing. How many times does someone need to read the poorly written rubbish she spews like these insightful tidbits: "I always look wonderful," "I am a fashionista," the "first thing I asked for out of surgery was lipstick because I wanted to look good when my husband saw me," blah, blah, blah. Does anyone out there in the universe find this helpful information for coping with breast cancer?
I jumped to chapter four about reconstruction. This is very complicated, interesting and technical. Fortunately, most of it was written by a physician. This chapter was very helpful, and I will reread it with a highlighter. (I skipped the areas respresenting the authors' personal feelings and experiences - my stomach couldn't take it.)
The next chapter is about chemotherapy - can't wait!
Whacky thought for the day...
Why is it the only time I cry is in church? Something about the words in some of the music hits me like a ton of bricks. It is so embarrassing! and we sit in the front of the church! Thank goodness for waterproof mascara! (Kiss Me by Bliss is absolutely the best mascara, and I have tried them all. I buy it as Sephora or on line....Keval's beauty tips for today.)
After church today, I started to read a book about coping with breast cancer. The forward by Evelyn Lauder,of Estee Lauder, was interesting. I'm glad that I use Estee Lauder products because Evelyn Lauder is a HUGE supporter of breast cancer research. She founded the Breast Cancer Research Foundation. Her goal is to raise enough money, and become so successful that it puts them - the BCRF - out of business. I like this attitude. After the forward, I am finding the content questionable.
The book was written by two successful, professional women. One is childless and completely self absorbed. It is enough to make you puke. At one point she writes, "Instead of fighting to get on the list for the latest Chanel bag, I was gearing up for the fight of my life." Really, this is a direct quote from the book! How melodramatic can one be? She sounds like a character on a soap opera. Did she steal this line from a harlequin book?
The beginning ot the book goes on and on about their thoughts of death and dying. The other author, who is a mother of two, writes about thoughts of leaving her two children motherless. I can honestly say that I have not had these thoughts. This is not an option. Is it assumed that all women think of death when they are diagnosed with breast cancer? These are professional women - shouldn't they know that the majority of women survive breast cancer if it hasn't spread to the rest of their body? Melodramatic women are embarassing to those of us (women) with a grip. But damn it, they planted this ugly seed, but I refuse to water and fertilize it. See, this is why no one should read these stupid books!
Needless to say, I skipped several pages, especially when the self-absorbed woman was writing. How many times does someone need to read the poorly written rubbish she spews like these insightful tidbits: "I always look wonderful," "I am a fashionista," the "first thing I asked for out of surgery was lipstick because I wanted to look good when my husband saw me," blah, blah, blah. Does anyone out there in the universe find this helpful information for coping with breast cancer?
I jumped to chapter four about reconstruction. This is very complicated, interesting and technical. Fortunately, most of it was written by a physician. This chapter was very helpful, and I will reread it with a highlighter. (I skipped the areas respresenting the authors' personal feelings and experiences - my stomach couldn't take it.)
The next chapter is about chemotherapy - can't wait!
Whacky thought for the day...
Why is it the only time I cry is in church? Something about the words in some of the music hits me like a ton of bricks. It is so embarrassing! and we sit in the front of the church! Thank goodness for waterproof mascara! (Kiss Me by Bliss is absolutely the best mascara, and I have tried them all. I buy it as Sephora or on line....Keval's beauty tips for today.)
Friday, March 19, 2010
Extra Long......
Warning: This is an extra long post. Before reading this, you might want to visit the bathroom, pour yourself a cup of coffee, or even better, a glass of wine.
Last Wednesday - two days ago - I came to the difficult realization that I need to find a new surgeon. Several factors lead to this decision. 1. Communication from the team of doctors is not optimal. 2. The two doctors that surgeon Dr. No Nickname assembled for the team were both fired by me: Dr. Ice Milk and Dr. Oz. 3. My neighbors "Mary"& Biz kept saying that I didn't seem too thrilled when talking about my care. True. 4. My friend and personal chef, The Clean Machine, kept telling me that I sounded uncertain about my care. True. 5. The final kicker - my CGA - Cancer Guardian Angel, and surgical nurse, Nurse O. Canada, called Bev. Hospital (not her hospital) a few days before my original surgery date arranging for the top nurse to be assigned to my case....gotta love the "nurse network!" When Nurse O. Canada told the top nurse my name and the surgeon's name, the top nurse told her that she had never heard of Dr. No Nickname. ( She used Dr. No Nickname's real name.) What?! A top surgical nurse at the hospital had never heard of the surgeon who is to be slicing and dicing my chest! Nurse O. Canada said that this doesn't necessarily indicate that she is not a good surgeon, and that possibly Dr. No Nickname is new to the North Shore.
I now have an appointment with Dr. Top Dog at Mass General Hospital Cancer Center. This woman is the director of the breast program for the Cancer Center. Thank you Realty Czar for this lead. The only bummer is that I can't get into see her until April 15. She is away for two weeks between now and April 15, so this is the earliest available appointment. I figured that I can wait a couple of weeks to get The Best breast surgeon in New England. I was asked by another friend, Wild Kingdom, if I can handle the stress of waiting, and I said that I believe there is enough alcohol in this area to keep me going...kind of funny because I drink so little. However, I do know of a decent chocolate store nearby!
Moving on to yesterday...
Yesterday I had an MRI Biopsy on the "cancer-free" right, by a different radiologist, Dr. Been There. She told me that she also had breast cancer a few years ago, and had been through all the same "stuff." Boy, if I look as good as she does on the other end, this will be better than any makeover! An MRI biopsy is pretty intense. I had to lie perfectly still, absolutely motionless, for almost an hour with my arms stretched over my head, face down, with my chin and forehead "resting" on a semi-soft/semi-firm surface. A grid is placed up against the spot to be biopsied, and then I am slid into the MRI machine for pictures to find the exact spot to be biopsied, the one that could not be seen on an ultrasound. (Unfortuantely this was done twice because the first position wasn't optimal, and I had to be repositioned on the table for a second set of pictures.) Using these pictures and the grid, Dr. Been There inserts a cathether-type needle into the site. I was slid back into the machine for a third set of pictures to make sure that the needle is in the correct location for the sampling. After verification, Dr. Been There very quickly took several samples of the mystery spot in my right side. Dr. Been There warned me that the sound when she takes samples will sound like a sewing machine. Little does she know that I sew, and this didn't quite sound like my sewing machine, the one I received for my 16th birthday! It sounded more like a drill , which I also own - cordless Ryobi- and use more than my sewing machine. I suppose saying that something taking chunks out of your breast sounds like a sewing machine sounds better than saying it sounds like a power drill. When I sat up after the hour-long procedure, I felt like I had a hangover, but without the benefit of a party, and much more expensive.
This biopsy required a larger needle than ultrasound biopsies, and therefore had more blood, more bruising, and more pain. It wasn't a walk in the park, but not totally unbearable.
I also learned yesterday that the samples of the satellite spots on the left side, located away from the golf ball - aka cancer - came back positive for cancer. This means that the left side is a complete mastectomy. If I have reconstruction this could mean that I will have one saggy and one perky. I will look like I had a stroke and one side is sagging, or that I am always signalling to turn left. Riley said that I will have to have all my pictures taken from my "good side."
The cherry on the sundae, hot fudge over Brigham's vanilla with whipped cream and nuts, was Molly almost getting hit by a car as we were walking home from school. Actually, I don't like cherries. As Riley,Molly, my neighbor and I were walking in the crosswalk at the corner of my street , Riley and I were on one end of the crosswalk, Molly and my neighbor were on the other side of the crosswalk, a crazy woman raced her car between us, honked her horn and then yelled at my 9 year old neighbor. (Side note - I live across the street from the Sacred Heart Church Parking Lot. There is a Montessori school in the daylight basement of the rectory. The parents pick up the Montessori students in this parking lot. Yes, even though the Catholic Church is across the street, we still barely make it to mass on time.) This crazy woman was late for picking up her child a the school. My neighbors and I see this wreckless behavior all the time - they parents are running late so they use Burnham Lane as Daytona Speedway. When I confronted the woman she went berserk on me. She got so close to my face that she was spitting in my face - gross - I hope she doesn't have any disease - oh yeh, I already have cancer. Then...are you ready for this...the woman shoved me and then walked away! Yes, she assaulted me! AND, she managed to shove me right on the location of my biopsy! I was more than a little shocked. But, I did something pretty funny, I went up to her, flashed my breast and said, "See this? This is breast cancer and you just hit me right in my biopsy." Her response was, "Well then, you are just having a bad day." She aggravated the biopsy site causing it to bleed.
Think about it, if you were to ever assault someone, don't you think a parking lot behind God's house is the absolute wrong location? It would have been cool if it was a stormy day and lighting cracked just about this time. Clearly, this woman has never seen the inside of a church!
Later that evening, my biopsy kept bleeding, developed a sickening bruise, and increased in pain. I called Nurse O. Canada at 8:30 pm to ask if she could change my steri-strips. (Steri strips are modern day butterfly bandaids. My mom could have used a case of these when we were growing up, especially on Roco's chin.) After I whipped off my shirt in her kitchen, she looked at the site and recommended that I go to the emergency room. So, after retrieving my book from home, I drove myself to the emergency room. The ER Doc and Nurse were very nice. I explained that had an MRI biopsy and they were interested as to what the procedure entailed. They were also intereseted in my breast cancer. It was all very funny because I think they asked more questions about my cancer and other things than about the reason I came in the first place. I was a living example of something they studied. I explained how I discovered it, the size, the testing, etc. I let them feel the cancer lump, and got a "wow." I chuckled. After a change of steri-strips, an extra-long ice pack, and a few vicodin, I drove myself home.
Six weeks ago, I would have considered myself a modest person. After tons of people, poking, prodding, biopsying, and x-raying, modesty became a thing of the past. However, I'm not quite ready for the nude beaches!
Last Wednesday - two days ago - I came to the difficult realization that I need to find a new surgeon. Several factors lead to this decision. 1. Communication from the team of doctors is not optimal. 2. The two doctors that surgeon Dr. No Nickname assembled for the team were both fired by me: Dr. Ice Milk and Dr. Oz. 3. My neighbors "Mary"& Biz kept saying that I didn't seem too thrilled when talking about my care. True. 4. My friend and personal chef, The Clean Machine, kept telling me that I sounded uncertain about my care. True. 5. The final kicker - my CGA - Cancer Guardian Angel, and surgical nurse, Nurse O. Canada, called Bev. Hospital (not her hospital) a few days before my original surgery date arranging for the top nurse to be assigned to my case....gotta love the "nurse network!" When Nurse O. Canada told the top nurse my name and the surgeon's name, the top nurse told her that she had never heard of Dr. No Nickname. ( She used Dr. No Nickname's real name.) What?! A top surgical nurse at the hospital had never heard of the surgeon who is to be slicing and dicing my chest! Nurse O. Canada said that this doesn't necessarily indicate that she is not a good surgeon, and that possibly Dr. No Nickname is new to the North Shore.
I now have an appointment with Dr. Top Dog at Mass General Hospital Cancer Center. This woman is the director of the breast program for the Cancer Center. Thank you Realty Czar for this lead. The only bummer is that I can't get into see her until April 15. She is away for two weeks between now and April 15, so this is the earliest available appointment. I figured that I can wait a couple of weeks to get The Best breast surgeon in New England. I was asked by another friend, Wild Kingdom, if I can handle the stress of waiting, and I said that I believe there is enough alcohol in this area to keep me going...kind of funny because I drink so little. However, I do know of a decent chocolate store nearby!
Moving on to yesterday...
Yesterday I had an MRI Biopsy on the "cancer-free" right, by a different radiologist, Dr. Been There. She told me that she also had breast cancer a few years ago, and had been through all the same "stuff." Boy, if I look as good as she does on the other end, this will be better than any makeover! An MRI biopsy is pretty intense. I had to lie perfectly still, absolutely motionless, for almost an hour with my arms stretched over my head, face down, with my chin and forehead "resting" on a semi-soft/semi-firm surface. A grid is placed up against the spot to be biopsied, and then I am slid into the MRI machine for pictures to find the exact spot to be biopsied, the one that could not be seen on an ultrasound. (Unfortuantely this was done twice because the first position wasn't optimal, and I had to be repositioned on the table for a second set of pictures.) Using these pictures and the grid, Dr. Been There inserts a cathether-type needle into the site. I was slid back into the machine for a third set of pictures to make sure that the needle is in the correct location for the sampling. After verification, Dr. Been There very quickly took several samples of the mystery spot in my right side. Dr. Been There warned me that the sound when she takes samples will sound like a sewing machine. Little does she know that I sew, and this didn't quite sound like my sewing machine, the one I received for my 16th birthday! It sounded more like a drill , which I also own - cordless Ryobi- and use more than my sewing machine. I suppose saying that something taking chunks out of your breast sounds like a sewing machine sounds better than saying it sounds like a power drill. When I sat up after the hour-long procedure, I felt like I had a hangover, but without the benefit of a party, and much more expensive.
This biopsy required a larger needle than ultrasound biopsies, and therefore had more blood, more bruising, and more pain. It wasn't a walk in the park, but not totally unbearable.
I also learned yesterday that the samples of the satellite spots on the left side, located away from the golf ball - aka cancer - came back positive for cancer. This means that the left side is a complete mastectomy. If I have reconstruction this could mean that I will have one saggy and one perky. I will look like I had a stroke and one side is sagging, or that I am always signalling to turn left. Riley said that I will have to have all my pictures taken from my "good side."
The cherry on the sundae, hot fudge over Brigham's vanilla with whipped cream and nuts, was Molly almost getting hit by a car as we were walking home from school. Actually, I don't like cherries. As Riley,Molly, my neighbor and I were walking in the crosswalk at the corner of my street , Riley and I were on one end of the crosswalk, Molly and my neighbor were on the other side of the crosswalk, a crazy woman raced her car between us, honked her horn and then yelled at my 9 year old neighbor. (Side note - I live across the street from the Sacred Heart Church Parking Lot. There is a Montessori school in the daylight basement of the rectory. The parents pick up the Montessori students in this parking lot. Yes, even though the Catholic Church is across the street, we still barely make it to mass on time.) This crazy woman was late for picking up her child a the school. My neighbors and I see this wreckless behavior all the time - they parents are running late so they use Burnham Lane as Daytona Speedway. When I confronted the woman she went berserk on me. She got so close to my face that she was spitting in my face - gross - I hope she doesn't have any disease - oh yeh, I already have cancer. Then...are you ready for this...the woman shoved me and then walked away! Yes, she assaulted me! AND, she managed to shove me right on the location of my biopsy! I was more than a little shocked. But, I did something pretty funny, I went up to her, flashed my breast and said, "See this? This is breast cancer and you just hit me right in my biopsy." Her response was, "Well then, you are just having a bad day." She aggravated the biopsy site causing it to bleed.
Think about it, if you were to ever assault someone, don't you think a parking lot behind God's house is the absolute wrong location? It would have been cool if it was a stormy day and lighting cracked just about this time. Clearly, this woman has never seen the inside of a church!
Later that evening, my biopsy kept bleeding, developed a sickening bruise, and increased in pain. I called Nurse O. Canada at 8:30 pm to ask if she could change my steri-strips. (Steri strips are modern day butterfly bandaids. My mom could have used a case of these when we were growing up, especially on Roco's chin.) After I whipped off my shirt in her kitchen, she looked at the site and recommended that I go to the emergency room. So, after retrieving my book from home, I drove myself to the emergency room. The ER Doc and Nurse were very nice. I explained that had an MRI biopsy and they were interested as to what the procedure entailed. They were also intereseted in my breast cancer. It was all very funny because I think they asked more questions about my cancer and other things than about the reason I came in the first place. I was a living example of something they studied. I explained how I discovered it, the size, the testing, etc. I let them feel the cancer lump, and got a "wow." I chuckled. After a change of steri-strips, an extra-long ice pack, and a few vicodin, I drove myself home.
Six weeks ago, I would have considered myself a modest person. After tons of people, poking, prodding, biopsying, and x-raying, modesty became a thing of the past. However, I'm not quite ready for the nude beaches!
Thursday, March 18, 2010
Nothing Left...
I had a hellish day today.
MRI Biopsy in the morning, ER in the evening, plus a lot of stuff in between.
It's 11:00p.m. EST and I just go home from the ER. (My blog is on PST.)
I have nothing left for energy, so I'll write about this wonderous day tomorrow.
Plus, I just took a vicodin, so this might turn out whackier than normal.
Stay tuned...same blog, same person, same cancer...
MRI Biopsy in the morning, ER in the evening, plus a lot of stuff in between.
It's 11:00p.m. EST and I just go home from the ER. (My blog is on PST.)
I have nothing left for energy, so I'll write about this wonderous day tomorrow.
Plus, I just took a vicodin, so this might turn out whackier than normal.
Stay tuned...same blog, same person, same cancer...
Tuesday, March 16, 2010
Second Opinion...
If at first you don't suceed, try option number 2.
Today I contacted Dana Farber Cancer Institute in Boston. I am expecting a call within 24 hours to discuss my cancer and to schedule an appointment. I am looking for a second opinion, and a team that has the same sense of urgency as I. The thought of driving back and forth into Boston is daunting, but I feel like I am going nowhere fast with my current course.
I sent a letter via fax to Dr. No Nickname today. I expressed my frustration with the testing process, and my discontent with the MRI and Ultrasound center. I do not know if she received the fax because I did not receive a call from her.
An MRI technician called me today to confirm the appointment for Thursday. She told me that the MRI biopsy takes about a hour. She said that I must keep perfectly still on the MRI table for most of that hour. The orders are still for just the right side, even though I believe it will probably be for the left side.
This patient's patience are wearing thin.
My poor family is living with a "Donkey On The Edge!"
Today I contacted Dana Farber Cancer Institute in Boston. I am expecting a call within 24 hours to discuss my cancer and to schedule an appointment. I am looking for a second opinion, and a team that has the same sense of urgency as I. The thought of driving back and forth into Boston is daunting, but I feel like I am going nowhere fast with my current course.
I sent a letter via fax to Dr. No Nickname today. I expressed my frustration with the testing process, and my discontent with the MRI and Ultrasound center. I do not know if she received the fax because I did not receive a call from her.
An MRI technician called me today to confirm the appointment for Thursday. She told me that the MRI biopsy takes about a hour. She said that I must keep perfectly still on the MRI table for most of that hour. The orders are still for just the right side, even though I believe it will probably be for the left side.
This patient's patience are wearing thin.
My poor family is living with a "Donkey On The Edge!"
Monday, March 15, 2010
Bunched Panties...
There is a distinct difference between questioning someone's judgement, and asking questions in an attempt understand someone's thought process that resulted in a decision. Today, when I asked the radiologist, Dr. Oz, a question regarding the mutiple biopsies scheduled for this week, he got his panties all in a bunch!
Today I had an ultrasound biopsy to take samples of the three lesions on the left side. I asked Dr. Oz if is he was going to take samples from all three spots...smart and logical question, if I do say so. He said that he can only see one on the ultrasound, therfore he will only be taking samples from one. If this sample comes back negative, then I will need to schedule another MRI biospy on top of the one scheduled for Thrusday. I said ok.
Wait a minute! After he left the room, I asked the nurse, "Why don't we just go straight to the MRI and bypass the ultrasound?" She said, "The ultrasound is less uncomfortable for you." "Less uncomfortable???" What? Again, hellooooooooooo, shouldn't I be the one making the comfortable/uncomfortable decision. If someone, anyone, gave me a choice, I would pass Go, collect $200, and go straight to the MRI. People, let's move on with this process - this is costing me time & money, and I'm trying to acquire Boardwalk and Park Place!
So, when I went into the ultrasound room, I asked Dr. Oz why don't we go directly to the MRI since the ultrasound can only give him samples of one lesion. The hair stood up on his neck, his ears pinned back, and he somewhat sharply responded that the ultrasound was more comfortable for me. I told him that comfort didn't matter at that point. Oops... the almighty Dr. Oz did not appreciate me continuing the conversation regarding MY treatment. He then said that it is easier for him, and that "there isn't a radiologist in the country who wouldn't prefer and ultrasound biopsy to a MRI biopsy." Ohhhhhhhhhhhh. Now I understand. It was all about his comfort. He didn't say anything technical about one method getting better information, or that one method is more reliable, only that one is easier, and preferable. Does logic every come into play? I had some very un-ladylike thoughts going through my mind as he was prepping for the biopsy.
Here's the other kicker. If one of the six samples - chucks of tissue - comes back negative, then I must have an MRI biospy on the left side. I asked if he could do both sides at the same time on Thursday - the original date for the right side. He said "No because the dye injected into my system doesn't last long enough to do both sides." The left side is "high priority" and the right side is "low priority" because it appears to be nothing. Everyone now knows how much I love it when someone tells me that something is nothing. What a train wreck!
Nurse Ratchett said that they only do MRI biopsies on Thrusdays. So does this mean that I am now stretching this whole testing, biospy process one more week?! By the time they get done with all this testing, they will need to start over to make sure the cancer didn't spread over these weeks while ultrasound and MRI couldn't get their shit together. Oops. sorry for the bad word - couldn't think of an appropriate synonym to replace it.
I also had another mammogram today on the left side. The purpose was to check the marker placed inside the breast where the biopsy took place. I hope it was the hat or the shoe - my brothers always fought over the car. It is funny how they don't even put the lead skirt on me anymore. They must figure...why bother...she's been nuked so much anyway.
Still not date for surgery.
Next Tuesday, March 23, I meet with surgeon Dr. No Nickname. Hopefully she will give me a surgery date.
At this point I am so frustrated, that I feel like taking my results and moving on to another team. I need a team that is not held hostage by the incompetence of MRI and ultrasound scheduling. There must be other MRI and Ultrasound clinics that can do these tests. Tomorrow I am going to call Dr. No Nickname and express my frustrations and concerns. But of course, you cannot call a doctor directly, not even leave a voicemail. You must call a myriad of other people, in hopes that they actually give the message to the doctor sometime this month. Perhaps a well-worded fax might get her attention. Stay tuned...
Some good news...the genetic testing of the BRCA 1 and BRCA 2 genes came back negative. This is good news for Riley and Molly because they will both be negative for this "cancer gene." Also, it ruled out an automatic double mastectomy - which doesn't sound so bad at this point.
Whacky thought for the day...
Why does it hurt so much when you whack your funny bone? Shouldn't it make you laugh instead of writhe in pain?
Today I had an ultrasound biopsy to take samples of the three lesions on the left side. I asked Dr. Oz if is he was going to take samples from all three spots...smart and logical question, if I do say so. He said that he can only see one on the ultrasound, therfore he will only be taking samples from one. If this sample comes back negative, then I will need to schedule another MRI biospy on top of the one scheduled for Thrusday. I said ok.
Wait a minute! After he left the room, I asked the nurse, "Why don't we just go straight to the MRI and bypass the ultrasound?" She said, "The ultrasound is less uncomfortable for you." "Less uncomfortable???" What? Again, hellooooooooooo, shouldn't I be the one making the comfortable/uncomfortable decision. If someone, anyone, gave me a choice, I would pass Go, collect $200, and go straight to the MRI. People, let's move on with this process - this is costing me time & money, and I'm trying to acquire Boardwalk and Park Place!
So, when I went into the ultrasound room, I asked Dr. Oz why don't we go directly to the MRI since the ultrasound can only give him samples of one lesion. The hair stood up on his neck, his ears pinned back, and he somewhat sharply responded that the ultrasound was more comfortable for me. I told him that comfort didn't matter at that point. Oops... the almighty Dr. Oz did not appreciate me continuing the conversation regarding MY treatment. He then said that it is easier for him, and that "there isn't a radiologist in the country who wouldn't prefer and ultrasound biopsy to a MRI biopsy." Ohhhhhhhhhhhh. Now I understand. It was all about his comfort. He didn't say anything technical about one method getting better information, or that one method is more reliable, only that one is easier, and preferable. Does logic every come into play? I had some very un-ladylike thoughts going through my mind as he was prepping for the biopsy.
Here's the other kicker. If one of the six samples - chucks of tissue - comes back negative, then I must have an MRI biospy on the left side. I asked if he could do both sides at the same time on Thursday - the original date for the right side. He said "No because the dye injected into my system doesn't last long enough to do both sides." The left side is "high priority" and the right side is "low priority" because it appears to be nothing. Everyone now knows how much I love it when someone tells me that something is nothing. What a train wreck!
Nurse Ratchett said that they only do MRI biopsies on Thrusdays. So does this mean that I am now stretching this whole testing, biospy process one more week?! By the time they get done with all this testing, they will need to start over to make sure the cancer didn't spread over these weeks while ultrasound and MRI couldn't get their shit together. Oops. sorry for the bad word - couldn't think of an appropriate synonym to replace it.
I also had another mammogram today on the left side. The purpose was to check the marker placed inside the breast where the biopsy took place. I hope it was the hat or the shoe - my brothers always fought over the car. It is funny how they don't even put the lead skirt on me anymore. They must figure...why bother...she's been nuked so much anyway.
Still not date for surgery.
Next Tuesday, March 23, I meet with surgeon Dr. No Nickname. Hopefully she will give me a surgery date.
At this point I am so frustrated, that I feel like taking my results and moving on to another team. I need a team that is not held hostage by the incompetence of MRI and ultrasound scheduling. There must be other MRI and Ultrasound clinics that can do these tests. Tomorrow I am going to call Dr. No Nickname and express my frustrations and concerns. But of course, you cannot call a doctor directly, not even leave a voicemail. You must call a myriad of other people, in hopes that they actually give the message to the doctor sometime this month. Perhaps a well-worded fax might get her attention. Stay tuned...
Some good news...the genetic testing of the BRCA 1 and BRCA 2 genes came back negative. This is good news for Riley and Molly because they will both be negative for this "cancer gene." Also, it ruled out an automatic double mastectomy - which doesn't sound so bad at this point.
Whacky thought for the day...
Why does it hurt so much when you whack your funny bone? Shouldn't it make you laugh instead of writhe in pain?
Sunday, March 14, 2010
Genetic Testing...
After I purchased a new car, all of a sudden I noticed several cars on the road of the same make, and began pay attention to the prevalence of this model. After I was diagnosed with breast cancer, I began to notice more articles and issues related to this disease. I knew they were out there, but always glanced over them. One of these issues I heard about, but never gave much attention, was genetic testing for cancer.
I asked my oncologist, Dr. Vanilla Bean, about genetic testing for cancer. He explained that there is a test that isolates the BRCA 1 and BRCA 2 genes. If either of these genes shows any sign of distortion, then the chances of developing breast or ovarian cancer is in the 70 percentile!
So when I met with surgeon, Dr. No Nickname, I asked her about this test, and she said that I could have it, if I want. Helloooooooo, of course I want. The test involved meeting with a nurse practioner, Nurse Gene, where she asked me several questions regarding family medical history. After she gathered all the information, she put it into a formula, resulting in a 15% chance that I might carry this gene. Nurse Gene asked if I wanted to continue with the test, and my answer was "No Dah...., " actually, "Yes, of course." There was a matter of insurance, because not all insurance companies cover this test. Insurance seems to be the deciding factor for every single test, scan, appointment, tissue, bandaid, etc. I have an appointment with Nurse Gene next Friday, March 19 to talk about the results.
When I think of genetic testing, I always thought it was very involved - something like a pound of flesh. However, this test consisted of drawing some blood that was sent off to Utah for testing.
So far, throughout this process, I learned that you must be loaded with questions, and question every decision. If I had not asked about genetic testing, it would have never been offered to me.
I believe it is the patients duty to get ALL the information. No one gives you information regardng all the testing options available. No one.
The MRI biopsy on Thursday, March 18, is a result of me insisting that the unknown lesion on my right be checked before surgery. (So far, everything has been on the left.) I was told that the lesion on the right was nothing, but as I wrote a few days ago, something can't be nothing. I want to know exactly what this something is before surgery plans are finalized. It's like baking a batch of cookies, you check to see that you have all the ingredients before you preheat the oven.
Whacky thought for the day...
Why is it when you buy a new car, all of a sudden it seems like there are a lot more of that model on the road? (8 years ago, but I still remember.)
Happy Birthday Conor!
I asked my oncologist, Dr. Vanilla Bean, about genetic testing for cancer. He explained that there is a test that isolates the BRCA 1 and BRCA 2 genes. If either of these genes shows any sign of distortion, then the chances of developing breast or ovarian cancer is in the 70 percentile!
So when I met with surgeon, Dr. No Nickname, I asked her about this test, and she said that I could have it, if I want. Helloooooooo, of course I want. The test involved meeting with a nurse practioner, Nurse Gene, where she asked me several questions regarding family medical history. After she gathered all the information, she put it into a formula, resulting in a 15% chance that I might carry this gene. Nurse Gene asked if I wanted to continue with the test, and my answer was "No Dah...., " actually, "Yes, of course." There was a matter of insurance, because not all insurance companies cover this test. Insurance seems to be the deciding factor for every single test, scan, appointment, tissue, bandaid, etc. I have an appointment with Nurse Gene next Friday, March 19 to talk about the results.
When I think of genetic testing, I always thought it was very involved - something like a pound of flesh. However, this test consisted of drawing some blood that was sent off to Utah for testing.
So far, throughout this process, I learned that you must be loaded with questions, and question every decision. If I had not asked about genetic testing, it would have never been offered to me.
I believe it is the patients duty to get ALL the information. No one gives you information regardng all the testing options available. No one.
The MRI biopsy on Thursday, March 18, is a result of me insisting that the unknown lesion on my right be checked before surgery. (So far, everything has been on the left.) I was told that the lesion on the right was nothing, but as I wrote a few days ago, something can't be nothing. I want to know exactly what this something is before surgery plans are finalized. It's like baking a batch of cookies, you check to see that you have all the ingredients before you preheat the oven.
Whacky thought for the day...
Why is it when you buy a new car, all of a sudden it seems like there are a lot more of that model on the road? (8 years ago, but I still remember.)
Happy Birthday Conor!
Saturday, March 13, 2010
Surgery Update...
I looked forward to the day I turned thirteen because I could get my ears pierced. I knew it would hurt, but the end result would be nice. - Wait. That's a bad analogy. How about...I remember waiting for the first day of school, I new it would be an adrenaline rush, but afterward would be the same old learning and homework crap. - Analogy still not quite right. Last Friday was the orginial date of my surgery. I was looking forward to it in a strange way, but it came and went without any slicing or dicing.
I still do not know when the surgery will be. I am guessing March 25th or 26th. Maybe the surgical team can sing "Happy Birthday" before the first incision...."Happy Birthday to you, Happy Birthday to you, we're going to get rid of your cancer, and your left boooooooob too!"
Monday 3/15 Ultrasound Biopsy
Thursday 3/18 MRI Biopsy
Friday 3/19 Appointment to discuss genetic testing results...more about this on next blog. I know, you just can't wait. This is just a teaser.
Week of 3/22?? Surgery
Quote Of The Day - a favorite:
"It is nice to be important, but more important to be nice." -Lisa Quigley
I still do not know when the surgery will be. I am guessing March 25th or 26th. Maybe the surgical team can sing "Happy Birthday" before the first incision...."Happy Birthday to you, Happy Birthday to you, we're going to get rid of your cancer, and your left boooooooob too!"
Monday 3/15 Ultrasound Biopsy
Thursday 3/18 MRI Biopsy
Friday 3/19 Appointment to discuss genetic testing results...more about this on next blog. I know, you just can't wait. This is just a teaser.
Week of 3/22?? Surgery
Quote Of The Day - a favorite:
"It is nice to be important, but more important to be nice." -Lisa Quigley
Wednesday, March 10, 2010
No Vacation...
Did you ever have a mosquitoe bite that itched so badly that it drove you crazy? The more you tried to not think about it the more it itched? It turns out the cancer is like a mosquitoe bite. The more I try to get away from it, relax, take a vacation from thinking about it, the more I think about it.
Don't get me wrong, we are having a great time skiing. However, my legs aren't having as great a time as the rest of my body. They keep screaming to me, "You are not 21 anymor! This is not Copper Mountain, and this is not that E chair that you once raced a friend nonstop top to bottom!" Or was it the A chair? - my mind has gone the way of my legs. (Lived, worked and skiied in Colorado - previous life, previous legs.)
I discovered that when you are busy with everyday life...getting kids to school, house cleaning, work, Brownies, afterschool activities, doctor's appointments, etc, the less time you have to dwell on any annoying and inconvenient illness. Plus, I'm dealing with first class hat hair! Oh yeh, one less problem to deal with in a few months. Can you imagine how much quicker it will be to get ready in the morning when you don't have to do your hair!
It looks like surgery will now be sometime the week of March 22. A very nice 49th birthday gift. I have an ultrasound biopsy on Monday, March 15 and MRI biopsy on Thursday, March 18. We need the results back before the surgery. I tried to move the MRI biopsy to earlier in the week, by Nurse Ratchett, the scheduling nurse for the MRI center, was less than ameniable.
Whacky thought for the day...
Why is it when someone is grumpy to you, it kind of makes you grumpy - if even for a moment.
And conversely, why is it when someone is very nice to you it puts you in a better mood?
We all have garbage in our lives that clouds a sunny day, but it takes the same amount of energy to be nice as to be grumpy. Actually, sometimes it seems like it takes a lot more energy to be nice, but isn't it worth? It is a scientific fact, one cannot be both grumpy and happy at the same time-after all these were two distinctly different dwarfs. Signed, Polyanna.
Don't get me wrong, we are having a great time skiing. However, my legs aren't having as great a time as the rest of my body. They keep screaming to me, "You are not 21 anymor! This is not Copper Mountain, and this is not that E chair that you once raced a friend nonstop top to bottom!" Or was it the A chair? - my mind has gone the way of my legs. (Lived, worked and skiied in Colorado - previous life, previous legs.)
I discovered that when you are busy with everyday life...getting kids to school, house cleaning, work, Brownies, afterschool activities, doctor's appointments, etc, the less time you have to dwell on any annoying and inconvenient illness. Plus, I'm dealing with first class hat hair! Oh yeh, one less problem to deal with in a few months. Can you imagine how much quicker it will be to get ready in the morning when you don't have to do your hair!
It looks like surgery will now be sometime the week of March 22. A very nice 49th birthday gift. I have an ultrasound biopsy on Monday, March 15 and MRI biopsy on Thursday, March 18. We need the results back before the surgery. I tried to move the MRI biopsy to earlier in the week, by Nurse Ratchett, the scheduling nurse for the MRI center, was less than ameniable.
Whacky thought for the day...
Why is it when someone is grumpy to you, it kind of makes you grumpy - if even for a moment.
And conversely, why is it when someone is very nice to you it puts you in a better mood?
We all have garbage in our lives that clouds a sunny day, but it takes the same amount of energy to be nice as to be grumpy. Actually, sometimes it seems like it takes a lot more energy to be nice, but isn't it worth? It is a scientific fact, one cannot be both grumpy and happy at the same time-after all these were two distinctly different dwarfs. Signed, Polyanna.
Friday, March 5, 2010
Change Of Plans...
It can be so frustrating when you picked out the perfect outfit and shoes, are having the best hair day, make-up is flawless, brilliant accessories , and then a change of plans. That is exactly how I felt today...got the right frame of mind, emotions are in place, family is all prepped, fat pants are cleaned, cancer is ready, but the surgery date is postponed.
Today I had an appointment with surgeon Dr. No Nickname. We told her today about these writings and that she doesn't have a nickname, so I call her Dr. No Nickname. I think she felt slighted by not having a nickname, even though Dr. No Nickname is her nickname. I though about calling her Dr. Queezy because she said that she gets queezy at the sight of her own blood. She didn't seem to embrace this name, so Dr. No Nickname it is.
Dr. No Nickname said that I need a biopsy on the three lesions floating around the cancer to see if they are also cancer. These were detected on the MRI. They immediately took me in for ultrasound #3 to locate this little lesions, and make them accessible to the radiologist for a biopsy. I didn't think that radiologists really existed, or that they they never came out from behind the curtain. I hear about them reading the x-rays, scans, MRIs, but didn't know they actually existed. So Dr. Oz -the radiologist- came in to do the biopsy, but one problem, there was no nurse to assist. They could not do the biopsy because the nurse went home at 11:30 and was gone for the day. What?! There was not another nurse in the entire hospital that could assit Dr. Oz with the biopsy! I have been psyching myself up for a couple of weeks for this surgery, but now I have to reschedule because someone can't adequately schedule staff? Also, MRI recently decided to close on Fridays, only available M-Th. It is difficult to schedule an MRI because they are so fully booked, yet they close on Fridays. Does anyone but me think that this is a poor way to run a business? I was one cranky Cancerasaurus today.
I was given two choices: 1. Cancel the necessary family getaway and get the two biopsies early next week 2. Go on the family trip and reschedule surgery. I voted for option 2. Cancer can wait, family cannot.
The second biospy is via another MRI for the other breast that has a fibroglandular island. Anything with the word "isalnd" can't be too bad, but no sand or plam trees.
So here are the scores for two weeks of tests:
X-rays/Mammograms = 2
Scans = 3
MRI = 1+1 scheduled
Blood Drawn = 3
Ultrasound = 3+1 scheduled
Radioactive IV= 2
Metalic IV= 2
It looks like Utrasound is in the lead with Scans and Blood Drawn fighting for second place, and third place is wide open... Maybe I watched a little too much Olympics.
Whacky thought for the day...
I discovered today that the lovely gown we wear for exams and ultrasounds in the doctor's office is also called a "johnny." What's up with that? I thought the word gown was strange enough, but johnny? I'm going to stick with hospital muumuu.
Happy Birthday Garrett!
Today I had an appointment with surgeon Dr. No Nickname. We told her today about these writings and that she doesn't have a nickname, so I call her Dr. No Nickname. I think she felt slighted by not having a nickname, even though Dr. No Nickname is her nickname. I though about calling her Dr. Queezy because she said that she gets queezy at the sight of her own blood. She didn't seem to embrace this name, so Dr. No Nickname it is.
Dr. No Nickname said that I need a biopsy on the three lesions floating around the cancer to see if they are also cancer. These were detected on the MRI. They immediately took me in for ultrasound #3 to locate this little lesions, and make them accessible to the radiologist for a biopsy. I didn't think that radiologists really existed, or that they they never came out from behind the curtain. I hear about them reading the x-rays, scans, MRIs, but didn't know they actually existed. So Dr. Oz -the radiologist- came in to do the biopsy, but one problem, there was no nurse to assist. They could not do the biopsy because the nurse went home at 11:30 and was gone for the day. What?! There was not another nurse in the entire hospital that could assit Dr. Oz with the biopsy! I have been psyching myself up for a couple of weeks for this surgery, but now I have to reschedule because someone can't adequately schedule staff? Also, MRI recently decided to close on Fridays, only available M-Th. It is difficult to schedule an MRI because they are so fully booked, yet they close on Fridays. Does anyone but me think that this is a poor way to run a business? I was one cranky Cancerasaurus today.
I was given two choices: 1. Cancel the necessary family getaway and get the two biopsies early next week 2. Go on the family trip and reschedule surgery. I voted for option 2. Cancer can wait, family cannot.
The second biospy is via another MRI for the other breast that has a fibroglandular island. Anything with the word "isalnd" can't be too bad, but no sand or plam trees.
So here are the scores for two weeks of tests:
X-rays/Mammograms = 2
Scans = 3
MRI = 1+1 scheduled
Blood Drawn = 3
Ultrasound = 3+1 scheduled
Radioactive IV= 2
Metalic IV= 2
It looks like Utrasound is in the lead with Scans and Blood Drawn fighting for second place, and third place is wide open... Maybe I watched a little too much Olympics.
Whacky thought for the day...
I discovered today that the lovely gown we wear for exams and ultrasounds in the doctor's office is also called a "johnny." What's up with that? I thought the word gown was strange enough, but johnny? I'm going to stick with hospital muumuu.
Happy Birthday Garrett!
Wednesday, March 3, 2010
The Handbook...
Today I went to the hospital for my pre-op appointment. After a 30 minute wait in the surgery waiting area, they called my name. The surgery waiting area reminded me of an airport jetway, with a television monitor listing all the patients in their varying states of operation: staging, operating, recovery, etc... landing, at gate, arrived. I walked into a small office with a nurse who informed me that this was a phone pre-admission screening. What? Fotunately I had my handy, dandy notebook with my prescreening orders that did not list this appointment as a phone screening appt.
When you are diagnosed with cancer, the diagnoser should immediately give the diagnosee a handbook/organizer. When my mom had her knee replaced, she was handed a binder with everything she ever needed to know, need to schedule, and explanations. I understand that each cancer has a million variables that makes each case unique, but there are some important tools and information that I think would be universally useful.
I got so overwhelmed with papers and appointments that I made my own notebook. There are 5 dividers: Notes, Requistions, Lab Reports, Medication, & Instructions. Natuarlly, I also have a calendar in this notebook. It is quite the fashion accessory.
Notes: I take tons of notes. There is so much information to retain. On most days, even before cancer, I could barely remember what I had for dinner the previous night. These notes are vitally important when you move to the next doctor and have questions. It helps compose the questions ahead of time. Helpful Hint to Docs: Offer a paper and pen for your patients to take notes. Most are in shock and can't even think ahead to take notes.
Requisitions: These are the papers telling you where and when you need to be for the next test, scan, and appointment. These papers also give instruction as to whether you can eat, drink and be merry before the test/scan. Acting confused (key word acting,) when actually I felt quite smug, I presented a copy of the pre-op orders to the nurse, showing her that it did not indicate that the pre-op was to be done via phone. Helpful Hint to Docs: Why don't you put a picture of the scan, and explain what this particular scan is looking for in the body?
Lab Reports: The only lab report in this section was given to me by Dr. No Nickname. It is the diagnosis of the lobular-type tumor, aka cancer. I learned from Dr. Vanilla Bean that only 10% of all breast cancers are this type...naturally, I have to be different, can't be like everyone else and get the other 90%- type of cancer. Anyway, that would be boring. What?!
Medications: After being asked twice for a list of every medication that I have taken in the past year - including Tylenol, I finally typed up a list, made copies, and put it in the notebook. After I compiled the list I felt like I needed to enter rehab - most were listed as needed for allergies and asthma - but wow, what a list. I was asked at least seven times for a list of medications. I was able to just attach the list to the forms, and promptly handed the forms back, maybe with a little big of organizer satisfacton . Helpful Hint to Docs: tell you patients to generate a list of meds and make copies.
Fashion: There can also be helpful fashion tips section that is useful when going in for the mutitude of scans. The only time you must change into a hospital muumuu is when you have an x-ray. Fashion tip: wear shoes that look okay without socks - socks and hospital muumuus are a definite fashion-don't. You can wear your clothes for all the scans, but, you cannot have a zipper in your pants, no wires in the bra, no belt buckles or wallet chains. By the third scan I figured out that I need to wear fat pants - the Thanksgiving feast, expandable Juicy-type pants and sports bra or cami. Hint to Docs: Why don't you write this in big bold letters on the requisitions: Fashion Alert - no metal!
I can go on and on about the information that should be organized in a mega-useful handbook, but it doesn't get much better than fat pants.
Whacky thought for the day...
Why is it when people say the something is nothing, I become skeptical? Something can't be nothing, because it is some thing. Only the lack of something can be nothing.
When you are diagnosed with cancer, the diagnoser should immediately give the diagnosee a handbook/organizer. When my mom had her knee replaced, she was handed a binder with everything she ever needed to know, need to schedule, and explanations. I understand that each cancer has a million variables that makes each case unique, but there are some important tools and information that I think would be universally useful.
I got so overwhelmed with papers and appointments that I made my own notebook. There are 5 dividers: Notes, Requistions, Lab Reports, Medication, & Instructions. Natuarlly, I also have a calendar in this notebook. It is quite the fashion accessory.
Notes: I take tons of notes. There is so much information to retain. On most days, even before cancer, I could barely remember what I had for dinner the previous night. These notes are vitally important when you move to the next doctor and have questions. It helps compose the questions ahead of time. Helpful Hint to Docs: Offer a paper and pen for your patients to take notes. Most are in shock and can't even think ahead to take notes.
Requisitions: These are the papers telling you where and when you need to be for the next test, scan, and appointment. These papers also give instruction as to whether you can eat, drink and be merry before the test/scan. Acting confused (key word acting,) when actually I felt quite smug, I presented a copy of the pre-op orders to the nurse, showing her that it did not indicate that the pre-op was to be done via phone. Helpful Hint to Docs: Why don't you put a picture of the scan, and explain what this particular scan is looking for in the body?
Lab Reports: The only lab report in this section was given to me by Dr. No Nickname. It is the diagnosis of the lobular-type tumor, aka cancer. I learned from Dr. Vanilla Bean that only 10% of all breast cancers are this type...naturally, I have to be different, can't be like everyone else and get the other 90%- type of cancer. Anyway, that would be boring. What?!
Medications: After being asked twice for a list of every medication that I have taken in the past year - including Tylenol, I finally typed up a list, made copies, and put it in the notebook. After I compiled the list I felt like I needed to enter rehab - most were listed as needed for allergies and asthma - but wow, what a list. I was asked at least seven times for a list of medications. I was able to just attach the list to the forms, and promptly handed the forms back, maybe with a little big of organizer satisfacton . Helpful Hint to Docs: tell you patients to generate a list of meds and make copies.
Fashion: There can also be helpful fashion tips section that is useful when going in for the mutitude of scans. The only time you must change into a hospital muumuu is when you have an x-ray. Fashion tip: wear shoes that look okay without socks - socks and hospital muumuus are a definite fashion-don't. You can wear your clothes for all the scans, but, you cannot have a zipper in your pants, no wires in the bra, no belt buckles or wallet chains. By the third scan I figured out that I need to wear fat pants - the Thanksgiving feast, expandable Juicy-type pants and sports bra or cami. Hint to Docs: Why don't you write this in big bold letters on the requisitions: Fashion Alert - no metal!
I can go on and on about the information that should be organized in a mega-useful handbook, but it doesn't get much better than fat pants.
Whacky thought for the day...
Why is it when people say the something is nothing, I become skeptical? Something can't be nothing, because it is some thing. Only the lack of something can be nothing.
Tuesday, March 2, 2010
Information Overload...
Have you even seen a cartoon where the characters input so much information into a machine that it begins to smoke and either fizzles out or explodes. Today I was that machine.
I met my new onocologist today. He wasn't exactly Mississippi Mud or Mocha Almond Fudge, but he was a premium brand of Vanilla Bean. Everyone loves a good vanilla, and it is an essential staple in our freezer.
The oncology center at Addison Gilbert Hospital in Gloucester, MA is absolutely beautiful! It is only one year old and cost $1.2 million, all private donations. It is named the "Gorton Center" - I think after the Gorton's Fisherman people. This makes me want to buy boxes of Gorton's fish sticks! All the walls are glass with beautiful etchings of long blades of grass or reeds that look like they are swaying in the wind. Some of the walls are clear glass and some are completely frosted for privacy. The chemotherapy treatment room is appears very tranquil as it overlooks the water. You can see all the way out to the Gloucester harbor entrance. Because it is on the fourth floor, it is rests among the tall trees on one side. The walls were a soothing beige with a slight tint of green - not sure if slight green is a great color when you are actually feeling green.
I must say that when I walked by the chemotherapy treatment area, my heart skipped a few beats - oh great, do I next need a cardiologist? Anyway, it all began to sink in a little deeper, and got a little scarier. When I get a nervous and scared I clam up tight - no steamer can get this baby open. Poor Chubba, I didn't want to talk about anything while we were waiting for Dr. Vanilla Bean in the conference room, I just wanted to stare out the window and climb into my shell.
Dr. Vanilla Bean reiterated what Dr. Ice Milk said about the cancer not spreading to the bloodstream, bones or organs. He also said that the results of the PET Scan showed that my cats are too fat - not really, well they are actually fat, but that's not what the scan showed - the scan indicated that the unknown on my second rib was nothing other than a prior injury - just what I thought - probably some gnarly ski accident 30 years ago - sounds good anyway.
However, the MRI showed 3 lesions somewhere around the golf ball cancer in the left breast. Guess what? Another biopsy! If these prove to be cancerous too, then the chances of a total mastectomy instead of a partial on the left side increases. (So if you have only one breast, does this mean your center of gravity has shifted? Will I be able to continue to make better right turns skiing than left, or will this off balance make them the same?) I have an appointment with surgeon Dr. No Nickname on Friday, and I'm hoping she can do the biopsy then - but only after my third ultrasound - at least my bladder won't be bursting and my teeth floating this time!
So here's the tentative schedule
March 7-11: Skiing with family in Vermont - not sure if insurance will cover this
March 12: Surgery - partial or full mastectomy not known yet.
2-4 weeks later: Chemotherapy for 5 months. One time every other week for 2 months, and then weekly for three months.
After Chemo: Radiation for 5-6 Weeks
After Radiation: A Hair-Raising Parrrrrrty!
Tomorrow is pre-op appointment at Beverly Hospital.
I'm getting ready to buckle up for Mr. Toad's Wild Ride!
I met my new onocologist today. He wasn't exactly Mississippi Mud or Mocha Almond Fudge, but he was a premium brand of Vanilla Bean. Everyone loves a good vanilla, and it is an essential staple in our freezer.
The oncology center at Addison Gilbert Hospital in Gloucester, MA is absolutely beautiful! It is only one year old and cost $1.2 million, all private donations. It is named the "Gorton Center" - I think after the Gorton's Fisherman people. This makes me want to buy boxes of Gorton's fish sticks! All the walls are glass with beautiful etchings of long blades of grass or reeds that look like they are swaying in the wind. Some of the walls are clear glass and some are completely frosted for privacy. The chemotherapy treatment room is appears very tranquil as it overlooks the water. You can see all the way out to the Gloucester harbor entrance. Because it is on the fourth floor, it is rests among the tall trees on one side. The walls were a soothing beige with a slight tint of green - not sure if slight green is a great color when you are actually feeling green.
I must say that when I walked by the chemotherapy treatment area, my heart skipped a few beats - oh great, do I next need a cardiologist? Anyway, it all began to sink in a little deeper, and got a little scarier. When I get a nervous and scared I clam up tight - no steamer can get this baby open. Poor Chubba, I didn't want to talk about anything while we were waiting for Dr. Vanilla Bean in the conference room, I just wanted to stare out the window and climb into my shell.
Dr. Vanilla Bean reiterated what Dr. Ice Milk said about the cancer not spreading to the bloodstream, bones or organs. He also said that the results of the PET Scan showed that my cats are too fat - not really, well they are actually fat, but that's not what the scan showed - the scan indicated that the unknown on my second rib was nothing other than a prior injury - just what I thought - probably some gnarly ski accident 30 years ago - sounds good anyway.
However, the MRI showed 3 lesions somewhere around the golf ball cancer in the left breast. Guess what? Another biopsy! If these prove to be cancerous too, then the chances of a total mastectomy instead of a partial on the left side increases. (So if you have only one breast, does this mean your center of gravity has shifted? Will I be able to continue to make better right turns skiing than left, or will this off balance make them the same?) I have an appointment with surgeon Dr. No Nickname on Friday, and I'm hoping she can do the biopsy then - but only after my third ultrasound - at least my bladder won't be bursting and my teeth floating this time!
So here's the tentative schedule
March 7-11: Skiing with family in Vermont - not sure if insurance will cover this
March 12: Surgery - partial or full mastectomy not known yet.
2-4 weeks later: Chemotherapy for 5 months. One time every other week for 2 months, and then weekly for three months.
After Chemo: Radiation for 5-6 Weeks
After Radiation: A Hair-Raising Parrrrrrty!
Tomorrow is pre-op appointment at Beverly Hospital.
I'm getting ready to buckle up for Mr. Toad's Wild Ride!
Monday, March 1, 2010
Emotions and Energy...
My emotions and energy have been like a seesaw; I'm on one side of the seesaw and cancer is on the other. Sometimes cancer has the better of me- I'm stuck at the top with my feet dangling, trying to get down. Other times, most times, I have cancer stuck at the top, and I have my feet firmly planted on the ground - laughing and mocking the cancer stuck up high.
When I was first told that the "suspicous" lump was cancer, I was sitting at my desk in our office. I kind of froze. I could hear the sound of air in the channels of my ears - like a very still, quiet night when you are trying to sleep. I didn't cry, didn't get upset, just froze. Chubba came in and gave me a hug, but I was still frozen. I think I might have cried, but don't remember - I only remember freezing. After a while, I sort of woke up and went home. The next day when my surgeon, Dr. No Nickname, was giving us a rundown, the tear gates opened, and out it poured. Dr. No Nickname was somewhat relieved to see tears because she said that she knew that I was understanding what she was saying to me. Thank goodness I was prepared with multiple handkerchiefs - I actually ironned them before I went to the appointment! I wanted to wipe my tears and snot with class.
I believe that tears weren't for me, they were for the girls. I knew how scared they were going to be when we told them. I felt their fright. Many moms will probably agree that once you have children, life isn't about me anymore...there is a reason that family is spelled with an "i" and not an "e". Life if better this way.
After I knew the girls were okay, then I got angry. Angry toward the cancer. Just plain ol' pissed off. It is really getting in the way of a lot of stuff . For a short time I was confused as to why others weren't pissed off with me - It is like I didn't want people to say "I'm so sorry.", I wanted them to get angry too and say something, like "That really sucks!" I am long over this stage now.
On a rare occasion, I get a quick whiff of anxiety - toward exactly what I am not sure - I guess the whole tangled ball of yarn. Thankfully, it doesn't last long.
It's really weird how this cancer thing is on your mind ALL the time.
Strange as it may seem, when I was first told that I had cancer, my energy was like Superwoman. There must have been some whacky adrenaline thing going through my system. I enjoyed this short-lived high energy. Unfortunately, my energy level now is like a big, giant banana slug. I think the stress is manifesting itself via sapping my energy. After I get the girls to school, I need a nap. Mid-day I need a 30 minute nap. Before dinner, a 30 minute rest helps. I sleep okay at night, but wake up every morning between 4-5am. My mind wonders a while before I fall back asleep.
So I went from tears, fright, anger, bits of anxiety to now I feel inconvenienced. Depending on the chemotherapy, this cancer could really be screwing up my summer travel plans to California for the month of August, my get in shape and look fabulous for my 50th birthday (12 months and a few weeks from today- yikes!) my raised vegetable garden I plan to build and plant with Molly, our business that is only 10 months old and ready to take off, etc...
Tomorrow I am meeting with oncologist number 2. I am sure he will be much better than Dr. Ice Milk. I have a positive vibe for the meeting. Thank you Julia and Becky for the recommendations of the same oncologist.
When I was first told that the "suspicous" lump was cancer, I was sitting at my desk in our office. I kind of froze. I could hear the sound of air in the channels of my ears - like a very still, quiet night when you are trying to sleep. I didn't cry, didn't get upset, just froze. Chubba came in and gave me a hug, but I was still frozen. I think I might have cried, but don't remember - I only remember freezing. After a while, I sort of woke up and went home. The next day when my surgeon, Dr. No Nickname, was giving us a rundown, the tear gates opened, and out it poured. Dr. No Nickname was somewhat relieved to see tears because she said that she knew that I was understanding what she was saying to me. Thank goodness I was prepared with multiple handkerchiefs - I actually ironned them before I went to the appointment! I wanted to wipe my tears and snot with class.
I believe that tears weren't for me, they were for the girls. I knew how scared they were going to be when we told them. I felt their fright. Many moms will probably agree that once you have children, life isn't about me anymore...there is a reason that family is spelled with an "i" and not an "e". Life if better this way.
After I knew the girls were okay, then I got angry. Angry toward the cancer. Just plain ol' pissed off. It is really getting in the way of a lot of stuff . For a short time I was confused as to why others weren't pissed off with me - It is like I didn't want people to say "I'm so sorry.", I wanted them to get angry too and say something, like "That really sucks!" I am long over this stage now.
On a rare occasion, I get a quick whiff of anxiety - toward exactly what I am not sure - I guess the whole tangled ball of yarn. Thankfully, it doesn't last long.
It's really weird how this cancer thing is on your mind ALL the time.
Strange as it may seem, when I was first told that I had cancer, my energy was like Superwoman. There must have been some whacky adrenaline thing going through my system. I enjoyed this short-lived high energy. Unfortunately, my energy level now is like a big, giant banana slug. I think the stress is manifesting itself via sapping my energy. After I get the girls to school, I need a nap. Mid-day I need a 30 minute nap. Before dinner, a 30 minute rest helps. I sleep okay at night, but wake up every morning between 4-5am. My mind wonders a while before I fall back asleep.
So I went from tears, fright, anger, bits of anxiety to now I feel inconvenienced. Depending on the chemotherapy, this cancer could really be screwing up my summer travel plans to California for the month of August, my get in shape and look fabulous for my 50th birthday (12 months and a few weeks from today- yikes!) my raised vegetable garden I plan to build and plant with Molly, our business that is only 10 months old and ready to take off, etc...
Tomorrow I am meeting with oncologist number 2. I am sure he will be much better than Dr. Ice Milk. I have a positive vibe for the meeting. Thank you Julia and Becky for the recommendations of the same oncologist.
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