One would think I would sleep like a baby being home in my own bed, in my own house?
Not me! First of all, the house was quite warm when I got home Tuesday night. I don't have central air so I quickly got all the fans going and my little air conditioner in the living room window put out all it could on high to give some help.
In my bedroom I have the overhead fan and an upright fan that blows on my bed. I keep the insulated curtain closed which helps. But when I finally decided I should try and get some sleep, I just could not get comfortable. I tossed and turned for about half hour. Got up and drank some ice water to cool down and tried again after reading for a few minutes. Nothing like actually being too tired to sleep!
Normal people would be out at least eight hours, especially after driving for six plus. Nope...nada...I made three and considered myself lucky, throwing off the covers again with a hot flash, only to pull them up five minutes later because I was cool again. I think I had also gotten a bit spoiled with the regularity of the air conditioner in my hotel rooms.
I read for a little bit until, after the clock had timed me for an hour, I turned to my old friend Nyquil for a little help going to back sleep. (Don't worry, my surgeon and oncologist both know of this and it is ok for now when I need it.)
Slept in until 10, picked up Foxy around 11, then went to pick up the mail. Checked email at home, read some notes, and did not like my attitude at all. I cried at the drop of a hat, was overly sensitive for sure, and knew this was NOT a day to interact with others until I got my headache under control and my head on straight too. By afternoon, Foxy and I both got sleepy. I went in to lie down about 1 and didn't wake up until the house phone rang at 5. Could not believe it!
Got up, unpacked some of my stuff, fixed food for Foxy, watered plants, and let my mind rest with a little tv. I didn't turn my cell phone on until around 8pm. I willingly crawled into bed for the night and it wasn't even 8:30 yet! For a night owl like me, times like that are almost unheard of. I had no idea how exhausted I was!
Woke up, turned on my cell phone to see the time, and at 4 this morning I was trying to find my charger while the phone was repeatedly beeping to let me know that it was dying. I got my sandals on, went into the garage, got in the car and plugged it in where it peacefully slept until a more reasonable hour on Thursday, and I did too with a little assistance from a hit of Nyquil.
When I came out of the fog, I remembered that my charger was plugged into the wall by the bed in that Ft. Atkinson, WI hotel. All the places I have gone, that has never happened!
So I didn't get to coffee on Wednesday, didn't get to Beads on Thursday, but I did finally catch up on some sleep now that I could finally rest from all the stress of the past few weeks. I guess that is a good thing.
But after filling my days with learning, exploring, getting my mind stimulated and discovering new things...what on earth will I do today?
Thursday, July 29, 2010
Tuesday, July 27, 2010
The trip from Wisconsin to Whitehall Tuesday, July 27, 2010
On the road again...
I spent last night southeast of Madison, Wisconsin in a small town called Ft Atkinson at another Holiday Inn Express. I am going to visit an old "friend" early in the morning, Rowe Pottery Works in Cambridge, just about 7 miles northwest of here. Jamie and I stopped there about 15 years ago.
Those of you who have visited my home have likely seen the various collection of pottery we had gathered, of which most are from what was once a small shop in Wisconsin. I can remember when we first stopped in the factory on England Street in on one of our trips east in the 80's. Started in 1975, they had the salt-glazed gray with cobalt blue pottery that I fell in love with. Over the years, we carefully selected pieces every now and then and occasionally, one would arrive in the mail to me sent by Jamie for Christmas. I was anxious to see how things had changed.
The heart pattern I have is not the one they are chosing to design with now (I like mine better!) but I wasn't goint to gather more of that, looking instead for new patterns and specifically for a loaf baking pan and a pie/quiche pan if I ran into one I liked. The chance to get these and save shipping and buy at store prices was too tempting and I ended up with unique patterns I don't already have, one with the pinewood pattern and the other a happy little bird on a branch. Made me happy too.
I left there about 10 CDT and headed south for Illinois. It was HOT in this area and I was so thankful to have air conditioning in the car. This was the day they had been telling everyone about in Minnesota and why I was also thrilled to be leaving. Rochester area was supposed to have temperatures between 88-95 with heat indexes between 95-105 and a low heat index at night of 95! Eeewwww! Wisconsin was feeling the heat and so was northern Illinois. The closer I got to Chicago, however, the clouds had moved in and were helping out a bit.
Traffic started to get pretty heavy as expected and the 294 exit south came before I could get over to take it. Oh well, I'll just go in on 90/94...ACK! That was an additional 50 minutes that I didn't really want to spend being a snail. We crept along for that length of time, inching our way due to road construction on the various exits and the looky-loos too. Did discover some other good radio stations around Chicago that perked me up with some variety.
Once I was south of Chicago, it was clear sailing home. Stopped only for gas in eastern Indiana. Didn't even take the time to stop in South Haven at Sherman's for my favorite ice cream for dinner stop. And some of you know what a sacrifice THAT was! It was cooler here, the traffic was moving comfortably, and I knew if I kept going, I'd be home by 6:30 at the latest...because I was DEFINITELY stopping at Panera Bread in Grand Haven for some cream of chicken and wild rice soup, a bagel and then one more stop at Starbucks a white chocolate mocha latte too before I headed home. That would be dessert!
I enjoyed the drive even through Chicago. It will be nice to pick up Foxy tomorrow, get my mail, and find out what being home again is like. It will take some adjusting I know. It will be good to see everyone once again too. But for tonight, I'm just glad to get the house cooled down, eat my soup, drink my coffee and relax from the rigors of the road. But I would do it all again in a heartbeat!
Night all...
I spent last night southeast of Madison, Wisconsin in a small town called Ft Atkinson at another Holiday Inn Express. I am going to visit an old "friend" early in the morning, Rowe Pottery Works in Cambridge, just about 7 miles northwest of here. Jamie and I stopped there about 15 years ago.
Those of you who have visited my home have likely seen the various collection of pottery we had gathered, of which most are from what was once a small shop in Wisconsin. I can remember when we first stopped in the factory on England Street in on one of our trips east in the 80's. Started in 1975, they had the salt-glazed gray with cobalt blue pottery that I fell in love with. Over the years, we carefully selected pieces every now and then and occasionally, one would arrive in the mail to me sent by Jamie for Christmas. I was anxious to see how things had changed.
The heart pattern I have is not the one they are chosing to design with now (I like mine better!) but I wasn't goint to gather more of that, looking instead for new patterns and specifically for a loaf baking pan and a pie/quiche pan if I ran into one I liked. The chance to get these and save shipping and buy at store prices was too tempting and I ended up with unique patterns I don't already have, one with the pinewood pattern and the other a happy little bird on a branch. Made me happy too.
I left there about 10 CDT and headed south for Illinois. It was HOT in this area and I was so thankful to have air conditioning in the car. This was the day they had been telling everyone about in Minnesota and why I was also thrilled to be leaving. Rochester area was supposed to have temperatures between 88-95 with heat indexes between 95-105 and a low heat index at night of 95! Eeewwww! Wisconsin was feeling the heat and so was northern Illinois. The closer I got to Chicago, however, the clouds had moved in and were helping out a bit.
Traffic started to get pretty heavy as expected and the 294 exit south came before I could get over to take it. Oh well, I'll just go in on 90/94...ACK! That was an additional 50 minutes that I didn't really want to spend being a snail. We crept along for that length of time, inching our way due to road construction on the various exits and the looky-loos too. Did discover some other good radio stations around Chicago that perked me up with some variety.
Once I was south of Chicago, it was clear sailing home. Stopped only for gas in eastern Indiana. Didn't even take the time to stop in South Haven at Sherman's for my favorite ice cream for dinner stop. And some of you know what a sacrifice THAT was! It was cooler here, the traffic was moving comfortably, and I knew if I kept going, I'd be home by 6:30 at the latest...because I was DEFINITELY stopping at Panera Bread in Grand Haven for some cream of chicken and wild rice soup, a bagel and then one more stop at Starbucks a white chocolate mocha latte too before I headed home. That would be dessert!
I enjoyed the drive even through Chicago. It will be nice to pick up Foxy tomorrow, get my mail, and find out what being home again is like. It will take some adjusting I know. It will be good to see everyone once again too. But for tonight, I'm just glad to get the house cooled down, eat my soup, drink my coffee and relax from the rigors of the road. But I would do it all again in a heartbeat!
Night all...
Monday, July 26, 2010
Car Talk with Dr. Getz Monday, July 26, 2010 afternoon
About 2 pm, my free and random thoughts were interrupted by my cell phone musically entertaining me with a call just a few miles shy of the Wisconsin-Minnesota border and La Crosse.
It was Dr. Getz, calling to reaffirm what Katie had told me. They had run the testing on the surgery tissue and I am considered HER2 negative. That was more common with my type of invasive lobular carcinoma and should also reduce the chance of reoccurance as well. There is no need for Herceptin at all so I no longer had to concern myself with the TCH protocol.
He went on to discuss the oncotype testing I had asked about and that is something I can talk with Dr. Alguire about when I see her next week. He also said I could take Tamoxifen but he was still encouraging me to consider one of the Aromatase Inhibitors that has been found more effective for postmenopausal women like myself. The type he recommended was Letrozol, trade name Femara. (That will have to be discussed with my insurance company as I know Tamoxifen is a covered prescription but not sure about the AI's and at $321.00 per month, we'll have to check this out)
He clarified a couple other things for me and was much more relaxed as I was. We had a really helpful discussion in regards to questions I had for him. But I knew my last question was going to be the one that made my treatment decision for me.
"Dr. Getz, I know that HER2 has various levels. From my biopsy, I was believed to be a 3+. Did I have a number this time too?"
"You are a 1+", he responded. I thanked him for his honesty, discussing things with me, and helping me towards getting my treatment started. For a moment, he seemed rather surprised, and then just said "You are welcome. I enjoyed meeting you and wish you good luck. I'll send the paperwork to your team and copies to you as well. Feel free to call me if you have any other questions or concerns." We were done.
I may or may not have gone full circle back to Dr. Batts' original recommendation: 4 hits of chemo or not, radiation, Tamoxifen for 5 years.
Chemotherapy kills the cancer cells. Dr. G had told me he had no doubt I could deal with it easily. Doing so would give me peace of mind knowing that I hit this little pesky tumor as aggressively as I could as well as any that may have just decided to vacation somewhere else unseen.
"0" HER2 level, means you do not have any cells showing any evidence of HER2.
"1+" means more than 10% of the tissue cells show partial evidence of HER2.
"2+" is the blasted gray area where the oncologist decides whether or not you have Herceptin and Chemo.
"3+", you have no choice, you do TCH...but not me, not now!
But you see, HER2 is a ghostly presence now, not a powerful force. Herceptin is not recommended for "0" or "1+" and that is well documented. That was the part I needed to have addressed and FINALLY, thanks to the pathologists at Mayo Clinic, it has been put to rest.
I left the weight of that "issue with the tissue" along the road somewhere in Minnesota. It's time to enjoy the scenery and focus on getting back home. Within a week or so, I will FINALLY have a treatment plan too!
It was Dr. Getz, calling to reaffirm what Katie had told me. They had run the testing on the surgery tissue and I am considered HER2 negative. That was more common with my type of invasive lobular carcinoma and should also reduce the chance of reoccurance as well. There is no need for Herceptin at all so I no longer had to concern myself with the TCH protocol.
He went on to discuss the oncotype testing I had asked about and that is something I can talk with Dr. Alguire about when I see her next week. He also said I could take Tamoxifen but he was still encouraging me to consider one of the Aromatase Inhibitors that has been found more effective for postmenopausal women like myself. The type he recommended was Letrozol, trade name Femara. (That will have to be discussed with my insurance company as I know Tamoxifen is a covered prescription but not sure about the AI's and at $321.00 per month, we'll have to check this out)
He clarified a couple other things for me and was much more relaxed as I was. We had a really helpful discussion in regards to questions I had for him. But I knew my last question was going to be the one that made my treatment decision for me.
"Dr. Getz, I know that HER2 has various levels. From my biopsy, I was believed to be a 3+. Did I have a number this time too?"
"You are a 1+", he responded. I thanked him for his honesty, discussing things with me, and helping me towards getting my treatment started. For a moment, he seemed rather surprised, and then just said "You are welcome. I enjoyed meeting you and wish you good luck. I'll send the paperwork to your team and copies to you as well. Feel free to call me if you have any other questions or concerns." We were done.
I may or may not have gone full circle back to Dr. Batts' original recommendation: 4 hits of chemo or not, radiation, Tamoxifen for 5 years.
Chemotherapy kills the cancer cells. Dr. G had told me he had no doubt I could deal with it easily. Doing so would give me peace of mind knowing that I hit this little pesky tumor as aggressively as I could as well as any that may have just decided to vacation somewhere else unseen.
"0" HER2 level, means you do not have any cells showing any evidence of HER2.
"1+" means more than 10% of the tissue cells show partial evidence of HER2.
"2+" is the blasted gray area where the oncologist decides whether or not you have Herceptin and Chemo.
"3+", you have no choice, you do TCH...but not me, not now!
But you see, HER2 is a ghostly presence now, not a powerful force. Herceptin is not recommended for "0" or "1+" and that is well documented. That was the part I needed to have addressed and FINALLY, thanks to the pathologists at Mayo Clinic, it has been put to rest.
I left the weight of that "issue with the tissue" along the road somewhere in Minnesota. It's time to enjoy the scenery and focus on getting back home. Within a week or so, I will FINALLY have a treatment plan too!
Results are in with another change July 26, 2010
It's Monday...
I called Mayo at 9:00 CDT this morning inquiring as to whether or not my pathology testing was completed, asking if I needed to stay for any other further tests or could head for home. They left a message for my oncology nurse practitioner, Katie, to give me a call on my cell phone. Since she was so good about returning calls, I just started packing up my belongings without any worries, certain she would be calling before I even got things to my car.
So I checked on my next hotel reservation, in case I needed it, and began to pack up my extensive "Mayo Library" of materials as well as all my clothes, etc. I enjoyed a cup of yogurt and looked forward to stopping one last time at Starbucks for a morning coffee. I was packed up by 10:45, went downstairs to pick up a cart so I didn't have to make as many trips, and was so grateful to be able to do it in one trip from the room.
After paying my parking expense for the four days, I wheeled my cart towards the parking garage door and went out to get the car. All the time I was loading it, I kept hoping that I wouldn't have to unload and do this all again in a couple days. It's been fun to have this vacation and I love staying in hotels, but usually when I can go more places and see more things...certainly not when it involves a medical situation that's had me tied in knots too long now!
Since Katie had not called yet, I decided I needed to go face to face with the wonderful receptionists/nurses at the oncology front desk on Gonda's 10th floor. If anyone could help me and get me the answers I needed, those ladies are the absolute best! There were at least 30 people waiting either to be seen or waiting for someone and I wasn't at all surprised. That is how it's been every time I've been up there. I walked to the waiting area and was the first and only in line, miracle of miracles, so I was able to get right up front.
"I have been waiting for a call from Dr. G or nurse practitioner Katie Z to let me know if my test results have been completed, if I have an appointment scheduled or if I can just go home. Can you help?" They punched the right things into the computer...Mayo patient number, last name, first name, birthdate and out popped the print out. Empty! So Rachel got right on the phone and called the department to get us both some news.
"Testing was completed, results were in and Katie has been tied up with patients, was presently with another, but would try to get to me as soon as she could," she reported. I thanked both the women who helped get my answers for me and headed back downstairs.
There was another beautiful concert in the atrium so I paused to listen for a moment. One woman with a very melodic soprano voice was singing "Think of Me" from Phantom of the Opera. That is the fifth time I've walked into the hospital and heard a selection from that musical...definitely haunting me here! Good thing I love that musical so much.
I listened to a few more various selections then headed across the street to Starbucks for my coffee and to use the computer for awhile, fully intending to catch up on my blog and get things posted. Within 15 minutes, I received the call from Katie, who apologize profusely for the delay, bless her heart.
The tests had been completed at the end of last week and the new pathology report on the lumpectomy tissue indicated that I am NOT HER2 positive. Now, I know that should have been great news to hear at that moment, but please understand. This was the third change in my diagnosis since this roller coaster ride began and HER2 positive has been with me for almost 3 months! It has been the knot in my stomach for SO LONG and now I hear "your tumor is HER2 negative, not positive". I was speechless again, just like in Dr. B's office.
She shared some other things with me, answered some of the questions I had as best she could, and told me she was so happy to be able to share this news since it also meant no more worries about Herceptin. I thanked her for all her help, support, and kindness and told her how much I appreciated her taking the time to share this news. She said she would be checking with Dr. G but that it was highly unlikely there would be any further reason for me to stay. She said what I had been hoping to hear today...I could go home!
As soon as I clicked off the call, I didn't know whether to laugh, cheer or cry! Am I really HER2 negative? What was my numerical rating? I should have asked! 0, 1+, 2+? I know it's not 3+ anymore, but what is it? These questions and others were swirling around in my head but I won't get any clarity here until I see the pathology report they just completed and talk with Dr. A.
So I just packed up the computer, grabbed my coffee and focused on getting over to the hotel and canceling the reservation I made for tonight in case I had to stay. And with that thought in mind, a huge smile crossed my face. For right now, she says HER2 negative so I'm taking it. Whatever else happens, happens. But the best news today is...I am really going home!
I called Mayo at 9:00 CDT this morning inquiring as to whether or not my pathology testing was completed, asking if I needed to stay for any other further tests or could head for home. They left a message for my oncology nurse practitioner, Katie, to give me a call on my cell phone. Since she was so good about returning calls, I just started packing up my belongings without any worries, certain she would be calling before I even got things to my car.
So I checked on my next hotel reservation, in case I needed it, and began to pack up my extensive "Mayo Library" of materials as well as all my clothes, etc. I enjoyed a cup of yogurt and looked forward to stopping one last time at Starbucks for a morning coffee. I was packed up by 10:45, went downstairs to pick up a cart so I didn't have to make as many trips, and was so grateful to be able to do it in one trip from the room.
After paying my parking expense for the four days, I wheeled my cart towards the parking garage door and went out to get the car. All the time I was loading it, I kept hoping that I wouldn't have to unload and do this all again in a couple days. It's been fun to have this vacation and I love staying in hotels, but usually when I can go more places and see more things...certainly not when it involves a medical situation that's had me tied in knots too long now!
Since Katie had not called yet, I decided I needed to go face to face with the wonderful receptionists/nurses at the oncology front desk on Gonda's 10th floor. If anyone could help me and get me the answers I needed, those ladies are the absolute best! There were at least 30 people waiting either to be seen or waiting for someone and I wasn't at all surprised. That is how it's been every time I've been up there. I walked to the waiting area and was the first and only in line, miracle of miracles, so I was able to get right up front.
"I have been waiting for a call from Dr. G or nurse practitioner Katie Z to let me know if my test results have been completed, if I have an appointment scheduled or if I can just go home. Can you help?" They punched the right things into the computer...Mayo patient number, last name, first name, birthdate and out popped the print out. Empty! So Rachel got right on the phone and called the department to get us both some news.
"Testing was completed, results were in and Katie has been tied up with patients, was presently with another, but would try to get to me as soon as she could," she reported. I thanked both the women who helped get my answers for me and headed back downstairs.
There was another beautiful concert in the atrium so I paused to listen for a moment. One woman with a very melodic soprano voice was singing "Think of Me" from Phantom of the Opera. That is the fifth time I've walked into the hospital and heard a selection from that musical...definitely haunting me here! Good thing I love that musical so much.
I listened to a few more various selections then headed across the street to Starbucks for my coffee and to use the computer for awhile, fully intending to catch up on my blog and get things posted. Within 15 minutes, I received the call from Katie, who apologize profusely for the delay, bless her heart.
The tests had been completed at the end of last week and the new pathology report on the lumpectomy tissue indicated that I am NOT HER2 positive. Now, I know that should have been great news to hear at that moment, but please understand. This was the third change in my diagnosis since this roller coaster ride began and HER2 positive has been with me for almost 3 months! It has been the knot in my stomach for SO LONG and now I hear "your tumor is HER2 negative, not positive". I was speechless again, just like in Dr. B's office.
She shared some other things with me, answered some of the questions I had as best she could, and told me she was so happy to be able to share this news since it also meant no more worries about Herceptin. I thanked her for all her help, support, and kindness and told her how much I appreciated her taking the time to share this news. She said she would be checking with Dr. G but that it was highly unlikely there would be any further reason for me to stay. She said what I had been hoping to hear today...I could go home!
As soon as I clicked off the call, I didn't know whether to laugh, cheer or cry! Am I really HER2 negative? What was my numerical rating? I should have asked! 0, 1+, 2+? I know it's not 3+ anymore, but what is it? These questions and others were swirling around in my head but I won't get any clarity here until I see the pathology report they just completed and talk with Dr. A.
So I just packed up the computer, grabbed my coffee and focused on getting over to the hotel and canceling the reservation I made for tonight in case I had to stay. And with that thought in mind, a huge smile crossed my face. For right now, she says HER2 negative so I'm taking it. Whatever else happens, happens. But the best news today is...I am really going home!
Sunday, July 25, 2010
Time to Go Out and Play! Sunday, July 25, 2010
I am fine, I've just been attending classes, seeing some of the area, and have kept the computer tucked away when I am out of the hotel room.
Today, I intended to stay here and finish my blog BUT...
It was in the low 80's but the humidity was only in the 50's. It was positively wonderful and refreshing today so I "went outside to play". LOL! It was wonderful!!! I also saw a movie this evening.
My cancer diagnosis made me realize that I should not take things or people for granted. I now try to embrace every day and do all that my body and my mind allow me to do. I work to really see the people I love for who they are and let them know constantly that I love them no matter what.
You know I have bad days, and I have since the 20th as well. Even the Pollyanna in me stuggles hard to keep a positive attitude. Fear of the future creeps into my thoughts at times but I try to be present for today only and not project something I have no way of knowing. "One day at a time" is a good saying for a good reason!
Keep checking back. I am such a perfectionist at times that I just can't let my feelings flow without going back, rereading, editing, and making sure the grammar, spelling and punctuation is as correct as possible! Once a teacher, always a teacher! LOL Thanks a bunch for your patience!
Today, I intended to stay here and finish my blog BUT...
It was in the low 80's but the humidity was only in the 50's. It was positively wonderful and refreshing today so I "went outside to play". LOL! It was wonderful!!! I also saw a movie this evening.
My cancer diagnosis made me realize that I should not take things or people for granted. I now try to embrace every day and do all that my body and my mind allow me to do. I work to really see the people I love for who they are and let them know constantly that I love them no matter what.
You know I have bad days, and I have since the 20th as well. Even the Pollyanna in me stuggles hard to keep a positive attitude. Fear of the future creeps into my thoughts at times but I try to be present for today only and not project something I have no way of knowing. "One day at a time" is a good saying for a good reason!
Keep checking back. I am such a perfectionist at times that I just can't let my feelings flow without going back, rereading, editing, and making sure the grammar, spelling and punctuation is as correct as possible! Once a teacher, always a teacher! LOL Thanks a bunch for your patience!
Saturday, July 24, 2010
Along the Mighty Mississippi Sat. July 24, 2010
There is beauty in each and every day and this day was filled with it! I headed north about 10 this morning, still undecided whether I would visit Minneapolis St Paul or avoid the big city completely, since I've been there before, and make my way down the Mississippi. The minute I approached the exit east for Red Wing, my response was immediate!
Red Wing, Minnesota is home to Red Wing Shoes and also Red Wing pottery. My late husband took one of those "let's get off the freeway" turns and we wandered down the Mississippi. Of course, that was too many years ago, things have grown and changed, but the character of Red Wing has stayed the same. I didn't remember the pottery store being where it was this time, but it didn't matter. Just stopping and wandering through was what I wanted to do with hopes to find one piece to bring home. The only thing we picked up there was a small mug. I was hoping for a bean pot or tea pot.
I watched the two potters work for a short while. They have a picture window that looks into the work area from the store. It is quaint, filled with different items and different patterns, and you could be in and out in a minute easily. My focus was on pottery with the red wing on it so after a once around, I pretty much knew where those were located. A small ramekin for ice cream/baking/whatever was gathered up to go home for one of my friends who definitely appreciates ice cream. Perfect to put into the freezer for a bit to help keep it cold. In reaching for it, I spotted my bean pot! It will more likely have soup in it come fall and winter, but how fortunate that it just happened to be 25% off that day! Was meant to be for sure! I also picked up a bag of Minnesota wild rice from Deer River, where my friend Leah is from. Because she shared a bowl of her wild rice soup one day, I was hooked on wild rice from that moment on!
Climbed back into the car and drove downtown Red Wing and walked a bit along the Mississippi waterfront and through the sidewalk market. The flower baskets hanging from the light poles were overflowing with a rainbow of colors and it fit the casual, hometown feel perfectly! I got an ice tea from Caribou Coffee, jumped into the car again and headed across the bridge into Wisconsin. More of their road from Red Wing to La Crosse is along the water and not so much inland and wanders through towns with names like Pepin, Alma, Buffalo, and Stockholm. I pulled over to catch the incredible blue sky and fluffy white clouds that hovered over the river, which was dotted with multicolored sails, jet skis, and other types of watercraft.
Stockholm obviously is a little tourist center, with wooden building of crafters, antiques, ice cream, restaurants, bakery, general store, etc. The roadway was filled with parked cars and though I doubled back to take a second look, I decided not to stop, continuing south towards LaCrosse, but crossed the bridge at Winona, Wisconsin and wandered some of the country roads south towards Harmony, Minnesota.
First of all, I loved the name! Second, when I did the Red Hat Society about four years ago, that was my name, and now, it is the little burg in Minnesota that touts itself as home to a sizable Amish population. I didn't know if I would get there in time to visit the bakeries or quilt stores, but just seeing that part of Minnesota near Iowa and wandering the country roads with the roadside vegie stands, horses, rolling hills and dairy lands was fine for me.
Went a bit farther east so I could take Highway 63 north to Rochester, since that one went right by my hotel in town and was, basically, a straight shot! My lunch had been a turkey and swiss on wild rice and cranberry bread, I had some cold grapes to snack on along with my bottled water, classical music, sunshine from beginning to end, found my pottery, and was finally pulling in for one of the best nights of sleep since I'd been here.
Today, I saw the blessings of nature and it enriched my spirit and warmed my soul. It was an incredible day and I am very thankful to have been able to enjoy it!
Red Wing, Minnesota is home to Red Wing Shoes and also Red Wing pottery. My late husband took one of those "let's get off the freeway" turns and we wandered down the Mississippi. Of course, that was too many years ago, things have grown and changed, but the character of Red Wing has stayed the same. I didn't remember the pottery store being where it was this time, but it didn't matter. Just stopping and wandering through was what I wanted to do with hopes to find one piece to bring home. The only thing we picked up there was a small mug. I was hoping for a bean pot or tea pot.
I watched the two potters work for a short while. They have a picture window that looks into the work area from the store. It is quaint, filled with different items and different patterns, and you could be in and out in a minute easily. My focus was on pottery with the red wing on it so after a once around, I pretty much knew where those were located. A small ramekin for ice cream/baking/whatever was gathered up to go home for one of my friends who definitely appreciates ice cream. Perfect to put into the freezer for a bit to help keep it cold. In reaching for it, I spotted my bean pot! It will more likely have soup in it come fall and winter, but how fortunate that it just happened to be 25% off that day! Was meant to be for sure! I also picked up a bag of Minnesota wild rice from Deer River, where my friend Leah is from. Because she shared a bowl of her wild rice soup one day, I was hooked on wild rice from that moment on!
Climbed back into the car and drove downtown Red Wing and walked a bit along the Mississippi waterfront and through the sidewalk market. The flower baskets hanging from the light poles were overflowing with a rainbow of colors and it fit the casual, hometown feel perfectly! I got an ice tea from Caribou Coffee, jumped into the car again and headed across the bridge into Wisconsin. More of their road from Red Wing to La Crosse is along the water and not so much inland and wanders through towns with names like Pepin, Alma, Buffalo, and Stockholm. I pulled over to catch the incredible blue sky and fluffy white clouds that hovered over the river, which was dotted with multicolored sails, jet skis, and other types of watercraft.
Stockholm obviously is a little tourist center, with wooden building of crafters, antiques, ice cream, restaurants, bakery, general store, etc. The roadway was filled with parked cars and though I doubled back to take a second look, I decided not to stop, continuing south towards LaCrosse, but crossed the bridge at Winona, Wisconsin and wandered some of the country roads south towards Harmony, Minnesota.
First of all, I loved the name! Second, when I did the Red Hat Society about four years ago, that was my name, and now, it is the little burg in Minnesota that touts itself as home to a sizable Amish population. I didn't know if I would get there in time to visit the bakeries or quilt stores, but just seeing that part of Minnesota near Iowa and wandering the country roads with the roadside vegie stands, horses, rolling hills and dairy lands was fine for me.
Went a bit farther east so I could take Highway 63 north to Rochester, since that one went right by my hotel in town and was, basically, a straight shot! My lunch had been a turkey and swiss on wild rice and cranberry bread, I had some cold grapes to snack on along with my bottled water, classical music, sunshine from beginning to end, found my pottery, and was finally pulling in for one of the best nights of sleep since I'd been here.
Today, I saw the blessings of nature and it enriched my spirit and warmed my soul. It was an incredible day and I am very thankful to have been able to enjoy it!
Friday, July 23, 2010
The "Racing Stripe" Mystery Friday, July 23, 2010
On Wednesday I went out to the Galaxy theater to have dinner (popcorn and soda of course) and watch Sorcerors Apprentice. The chairs were velvety, high backed and rocked! I was in heaven and seated right in the middle with the aisle in front of me. Leg room AND a rocking chair!
After I left the theater and got into my car I noticed a black stripe on my right pant leg just above the knee. Well, I had purchased some new sandals that morning for walking and thought "Hmmm, must be the black on the bottom of the sandal that rubbed off on my pant. Have to be more careful." I thought about it a bit more. Didn't think I had put my shoe on my knee...hmmmm.
I looked down and noticed a spot on the back of my left calf. Ok, this is weird! There's no way I rubbed my shoe there! Or did I? Just because, I looked at the back of my right calf. Sure enough, there was a spot there too! Now this is ridiculous! Luckily I had some napkins in the car, took some water and rubbed it off. Rhonda didn't know how handy her moisturizing cream was going to be as I had that on my legs and the unknown black gook came off pretty easily with a couple napkins I had stowed away. There! Done!
Off I went back to the hotel, got out of the car, walked into the lobby and headed back upstairs. Got into my room and was taking off my sandals when "Dang!" I again had two spots, same place! "I've been in the car for crying out loud there is no way I put my sandals on the backs of my legs." Went in the bathroom, washed it off, wondered awhile, then left it for Thursday.
Went all over the place on foot on Thursday and even wore the same shoes. The area stores were having sidewalk sales, so I was browsing and just enjoying the day. I kept looking down every so often to check and see if I had managed to "scuff" up the backs of my calves but no evidence. That started to put the focus on the car.
Friday I walked the skyway to the Mayo building to take a Tai Chi class. They have several auditoriums used for a variety of classes, presentations and other activities. I had to be there at 8:30 am and it was quite enjoyable. Did some research in the library, wandered through some of the shops in the subway between Mayo Clinic and Barnes and Noble about 2 blocks away. Had a cup of coffee from Starbucks, read, clear legs still! But, the mystery was about to end.
About 2:30, I got in the car to find the second movie theater on my list. I felt my brain was ready for a challenge and some good music so I was off to see Inception. Just before I got out of the car to go into the theater I looked down...Dang! My black racing stripes were there again, in about the same place, same direction!
I took out some of my extra napkins, opened the car door, reached down alongside the seat along the bottom of the door frame. First, nothing. Then I went along the side. YUCK! Grease! Of course I didn't see it. My car is brown and even when you look for it you can't see it. I took a couple more napkins and got off what I THOUGHT was all of it. Little did I know...
Went into the movie theater, got my ticket, looked down and I had managed to get more on each leg and I thought I had avoided it as I slid out of the car. Into the bathroom and thank goodness for paper towels! I put a couple in my purse to help when I came back out.
The movie and dinner was great and, of course, I had forgotten all about my little adventure with my greasy car. In I went and could have hit myself over the head with a hammer! Duh! A little farther down, but still there! Two lovely black racing stripes.
Further examination when I returned to the hotel showed there wasn't anything on the right side of my car, only the drivers side. When I was in WA, kids were known to pull pranks like this in the mall parking lots either as initiation or just to be pests. I used those paper towels, wiped all the space below the door down really well and remained "racing stripe free" through my whole Saturday trip. For a person who loves mysteries, it certainly took me long enough to figure out my own!
After I left the theater and got into my car I noticed a black stripe on my right pant leg just above the knee. Well, I had purchased some new sandals that morning for walking and thought "Hmmm, must be the black on the bottom of the sandal that rubbed off on my pant. Have to be more careful." I thought about it a bit more. Didn't think I had put my shoe on my knee...hmmmm.
I looked down and noticed a spot on the back of my left calf. Ok, this is weird! There's no way I rubbed my shoe there! Or did I? Just because, I looked at the back of my right calf. Sure enough, there was a spot there too! Now this is ridiculous! Luckily I had some napkins in the car, took some water and rubbed it off. Rhonda didn't know how handy her moisturizing cream was going to be as I had that on my legs and the unknown black gook came off pretty easily with a couple napkins I had stowed away. There! Done!
Off I went back to the hotel, got out of the car, walked into the lobby and headed back upstairs. Got into my room and was taking off my sandals when "Dang!" I again had two spots, same place! "I've been in the car for crying out loud there is no way I put my sandals on the backs of my legs." Went in the bathroom, washed it off, wondered awhile, then left it for Thursday.
Went all over the place on foot on Thursday and even wore the same shoes. The area stores were having sidewalk sales, so I was browsing and just enjoying the day. I kept looking down every so often to check and see if I had managed to "scuff" up the backs of my calves but no evidence. That started to put the focus on the car.
Friday I walked the skyway to the Mayo building to take a Tai Chi class. They have several auditoriums used for a variety of classes, presentations and other activities. I had to be there at 8:30 am and it was quite enjoyable. Did some research in the library, wandered through some of the shops in the subway between Mayo Clinic and Barnes and Noble about 2 blocks away. Had a cup of coffee from Starbucks, read, clear legs still! But, the mystery was about to end.
About 2:30, I got in the car to find the second movie theater on my list. I felt my brain was ready for a challenge and some good music so I was off to see Inception. Just before I got out of the car to go into the theater I looked down...Dang! My black racing stripes were there again, in about the same place, same direction!
I took out some of my extra napkins, opened the car door, reached down alongside the seat along the bottom of the door frame. First, nothing. Then I went along the side. YUCK! Grease! Of course I didn't see it. My car is brown and even when you look for it you can't see it. I took a couple more napkins and got off what I THOUGHT was all of it. Little did I know...
Went into the movie theater, got my ticket, looked down and I had managed to get more on each leg and I thought I had avoided it as I slid out of the car. Into the bathroom and thank goodness for paper towels! I put a couple in my purse to help when I came back out.
The movie and dinner was great and, of course, I had forgotten all about my little adventure with my greasy car. In I went and could have hit myself over the head with a hammer! Duh! A little farther down, but still there! Two lovely black racing stripes.
Further examination when I returned to the hotel showed there wasn't anything on the right side of my car, only the drivers side. When I was in WA, kids were known to pull pranks like this in the mall parking lots either as initiation or just to be pests. I used those paper towels, wiped all the space below the door down really well and remained "racing stripe free" through my whole Saturday trip. For a person who loves mysteries, it certainly took me long enough to figure out my own!
Thursday, July 22, 2010
Ann, Chemo Class, and the Gift to Believe .....Thurs. Afternoon July 22, 2010
This is for "Ann"...the angel who spent a brief moment in my life and shared her gift of hope and dreams.
I walked into the conference room off the Cancer Library to attend a class giving information and offering to answer questions regarding chemotherapy. Though I wasn't certain what type or if I was having chemo, I couldn't pass up the once a week opportunity to learn what I could from oncology nurses who work with patients every day. One such one was Crystal who would be teaching ours.
Across from me sat two sisters from some location that was six hours west of Rochester. They were in their late 60's, early 70's from what I gathered and the woman seated directly across from me was married to the man about to begin chemotherapy for non-hodkins lymphoma. She was very concerned as one of his sessions was likely to take 8 hours to the mix the chemicals involved, check his reactions, get the treatment itself, etc. There is always someone much worse off than you when you listen and open your eyes.
Like the woman who later sat down on my left along with her daughter. She was around my age with very warm eyes and friendly smile who entered the room rather slowly. Crystal explained we were going to be viewing a video first and then would have an open session of information and questions, she also asked if everyone could hear and if we were comfortable so we could begin. The woman on my left put a big smile on her face, sat back a bit in her chair and said, "About as comfortable as anyone can be just coming from a treatment," and she laughed. It was then I really noticed her hospital "bracelet" and the tube that extended under her blouse. We all laughed a little with her smiled back. The room was instantly more comfortable too.
The video was well done and honest. It gave the good points and the low ones as well as suggestions for how to deal with some of the side effects. We were also given another folder with materials that would be helpful to us. Crystal spoke a bit then it was question and answer time where we all took turns, listening and learning from each other.
One moment though was indescribeable in the feelings that went through me. I am going to try my best to share it here regarding the woman next to me, whom I will call Ann.
I asked Crystal about TCH chemo treatment, which was what I was facing at that time. Crystal's first reaction was, "Oh my, that burns!" She explained that if it leaks out of the vein due to a bad puncture, it can burn under your skin. which I had been told. I then mentioned I was going to have a port put in just below my right shoulder blade and wondered if they were a problem to keep clean or care for.
At that instant, Ann perked up and said, "Well, I can show you," and she pulled back the top of her blouse on the right side, showed me hers and explained how easy it had been for her. Crystal explained that some were a bit different, as Ann's had a two inch tube covered by a plastic shield outlined with medical tape to hold it tightly in place. Ann went on to explain hers was a bit different but the port was a blessing because she was on chemo 24 hours a day thanks to the fanny pack of sorts that was on the left side of her waist.
Then, I said to her, "Do you mind if I ask you what type of cancer you are dealing with?"
"I am terminal." For a moment, you could have cut the air with a knife.
Instinctively, I reached out with my left hand and put mine on her right one. "I am sorry." At that time, to me, there was no one else in the room but Ann.
She smiled and we gave each other a squeeze. "But let me tell you how we discovered it," she said. "I had been wanting to go to Italy for as long as I could remember. See Rome, Venice, the Partenon, Vatican, anything and everything and had been working towards the opportunity to get there. This spring my daughter, a niece, my granddaughter, and I flew there, had a marvelous time and I felt absolutely wonderful. I'd had breast cancer 19 years ago but since then, no health problems except the usual things now and then, colds, you know. I can't begin to tell you what a wonderful time we had."
She didn't have to. A sparkle shone in her eyes as her tiredness seemed to fade in all her excitement as she shared parts of this adventure with such delight.
"Within two weeks of my arriving home, I felt awful and I just didn't feel I had over done that much," taking in a breath as she chuckled. "So I went in to the doctor, they ran tests and discovered that the cancer had metastized. I was Stage IV and terminal. That's why I carry my little bag with me here," she said as she tapped her chemo bag with her left hand.
Everyone in the room was quiet. Again, only acting on the feeling that the words would come to me I was even surprised when I heard myself say, "How incredibly wonderful to have been able to make so many beautiful memories in Italy with the girls you love and also get the chance to finally experience something you had only dreamed of."
Her smile grew wide. "Absolutely. I believe I was given an amazing gift and I honestly consider myself very lucky."
Lucky! Hardly the word most terminal patients would use to describe themselves and it put many things into perspective.
I believe Ann was one of those special people that appears in your life for just a moment, but with something said or a deed done, makes a change someway in your life. Whatever passed between us when I looked into her eyes was a warm feeling of confidence and reassurance that lifted the spirit. It meant for both of us, everything was going to be alright, just different. There was no feeling of fear, no sadness, only hope, revelation, and joy.
I could see in her eyes I had touched her heart and could tell she recognized she had also touched mine. I felt a peace in the room as Ann and her daughter walked through the door and made their way out into the busy corridor. But I will carry that enlightened moment to help me through any difficult moment that may come.
Hmmm...I am thinking my goal after treatment is my trip to Paris and the French countryside, for that has always been my dream. And I wouldn't want to miss it!
I walked into the conference room off the Cancer Library to attend a class giving information and offering to answer questions regarding chemotherapy. Though I wasn't certain what type or if I was having chemo, I couldn't pass up the once a week opportunity to learn what I could from oncology nurses who work with patients every day. One such one was Crystal who would be teaching ours.
Across from me sat two sisters from some location that was six hours west of Rochester. They were in their late 60's, early 70's from what I gathered and the woman seated directly across from me was married to the man about to begin chemotherapy for non-hodkins lymphoma. She was very concerned as one of his sessions was likely to take 8 hours to the mix the chemicals involved, check his reactions, get the treatment itself, etc. There is always someone much worse off than you when you listen and open your eyes.
Like the woman who later sat down on my left along with her daughter. She was around my age with very warm eyes and friendly smile who entered the room rather slowly. Crystal explained we were going to be viewing a video first and then would have an open session of information and questions, she also asked if everyone could hear and if we were comfortable so we could begin. The woman on my left put a big smile on her face, sat back a bit in her chair and said, "About as comfortable as anyone can be just coming from a treatment," and she laughed. It was then I really noticed her hospital "bracelet" and the tube that extended under her blouse. We all laughed a little with her smiled back. The room was instantly more comfortable too.
The video was well done and honest. It gave the good points and the low ones as well as suggestions for how to deal with some of the side effects. We were also given another folder with materials that would be helpful to us. Crystal spoke a bit then it was question and answer time where we all took turns, listening and learning from each other.
One moment though was indescribeable in the feelings that went through me. I am going to try my best to share it here regarding the woman next to me, whom I will call Ann.
I asked Crystal about TCH chemo treatment, which was what I was facing at that time. Crystal's first reaction was, "Oh my, that burns!" She explained that if it leaks out of the vein due to a bad puncture, it can burn under your skin. which I had been told. I then mentioned I was going to have a port put in just below my right shoulder blade and wondered if they were a problem to keep clean or care for.
At that instant, Ann perked up and said, "Well, I can show you," and she pulled back the top of her blouse on the right side, showed me hers and explained how easy it had been for her. Crystal explained that some were a bit different, as Ann's had a two inch tube covered by a plastic shield outlined with medical tape to hold it tightly in place. Ann went on to explain hers was a bit different but the port was a blessing because she was on chemo 24 hours a day thanks to the fanny pack of sorts that was on the left side of her waist.
Then, I said to her, "Do you mind if I ask you what type of cancer you are dealing with?"
"I am terminal." For a moment, you could have cut the air with a knife.
Instinctively, I reached out with my left hand and put mine on her right one. "I am sorry." At that time, to me, there was no one else in the room but Ann.
She smiled and we gave each other a squeeze. "But let me tell you how we discovered it," she said. "I had been wanting to go to Italy for as long as I could remember. See Rome, Venice, the Partenon, Vatican, anything and everything and had been working towards the opportunity to get there. This spring my daughter, a niece, my granddaughter, and I flew there, had a marvelous time and I felt absolutely wonderful. I'd had breast cancer 19 years ago but since then, no health problems except the usual things now and then, colds, you know. I can't begin to tell you what a wonderful time we had."
She didn't have to. A sparkle shone in her eyes as her tiredness seemed to fade in all her excitement as she shared parts of this adventure with such delight.
"Within two weeks of my arriving home, I felt awful and I just didn't feel I had over done that much," taking in a breath as she chuckled. "So I went in to the doctor, they ran tests and discovered that the cancer had metastized. I was Stage IV and terminal. That's why I carry my little bag with me here," she said as she tapped her chemo bag with her left hand.
Everyone in the room was quiet. Again, only acting on the feeling that the words would come to me I was even surprised when I heard myself say, "How incredibly wonderful to have been able to make so many beautiful memories in Italy with the girls you love and also get the chance to finally experience something you had only dreamed of."
Her smile grew wide. "Absolutely. I believe I was given an amazing gift and I honestly consider myself very lucky."
Lucky! Hardly the word most terminal patients would use to describe themselves and it put many things into perspective.
I believe Ann was one of those special people that appears in your life for just a moment, but with something said or a deed done, makes a change someway in your life. Whatever passed between us when I looked into her eyes was a warm feeling of confidence and reassurance that lifted the spirit. It meant for both of us, everything was going to be alright, just different. There was no feeling of fear, no sadness, only hope, revelation, and joy.
I could see in her eyes I had touched her heart and could tell she recognized she had also touched mine. I felt a peace in the room as Ann and her daughter walked through the door and made their way out into the busy corridor. But I will carry that enlightened moment to help me through any difficult moment that may come.
Hmmm...I am thinking my goal after treatment is my trip to Paris and the French countryside, for that has always been my dream. And I wouldn't want to miss it!
Feelings all over the map today Morning...Thursday, July 22, 2010
I have always loved the "Music Box Dancer". I don't know if it's because it plays into my imagination or if it is because it is just light, airy, magical or just because it always makes me smile. But when I walked into the atrium today and sat down near the pianist to listen to him play, that was the first song I heard and it did make me smile. He played it perfectly, with all the little nuances that made it special. I love listening to and watching someone play. He was just one of the employees here at the Clinic and I was just lucky to have him play a song that touches my heart.
It's another one of those days again and I didn't expect it so soon after Tuesday. One thing about music though, when I need a lift and there's a song that can touch how I am feeling, I can travel along on the notes and right out of the darkness. I can escape with it or flow with it but I can not live without it.
Today it helps mask what I am feeling...uncertainty, indecision, and no sense of belonging anywhere in particular. Not my old home, or my new home and what constitutes a home anyway? I have thought about moving, but to where? And for what reason? What would it prove? It's just the runaway syndrome and I believe it isn't all that uncommon.
Though many of you are missed, it is good to have this time away. Some well-meaning friends have tried to explain away my feelings, minimizing them without realizing it. You feel, I feel...I am just writing it down in my vulnerability and it isn't easy. Some have told other friends who should or how I should be handling my care.
Honestly, when it comes right down to it, I truly am the only one who has to live with the decision I make. That is reality when you live on your own.
Most of my friends and family who know me best just listen, send positive thoughts, tell me about their day, send words of hope or support or warmly encourage me to do what I feel is best. I know you are there if I need to think things through with someone and I am grateful and appreciate the net you have put underneath me just in case.
But as I walk out of the atrium towards my chemotherapy class in the Cancer Library on the main floor my monkey mind is reeling. I take a breath, close my eyes a moment and remind myself...I am NOT my cancer!
Does it consume me at times? Definitely!
Do I obsess over it? Sometimes, and I guess you can tell by the posts before this.
Do I feel it has changed my life? More than you can imagine.
Do I sometimes get emotional, excitable, or overly technical when I discuss it with others? Yes and believe me, I am working on controlling that to keep it to a minimum.
Will I let it run my life? Not any more than necessary but sometimes I may not have a choice in the matter.
But I have to live with it.
I already worked through the "If only I didn't have cancer...". Those times were rough but nothing changed because of my "if only" except my attitude. Time to quit wallowing and do what I can. And I will do whatever it takes to be as aggressive in my treatment as possible.
I don't ever want to look back and say, "If only I would have asked that question, suggested that treatment, requested that test, taken that big step..."
It's another one of those days again and I didn't expect it so soon after Tuesday. One thing about music though, when I need a lift and there's a song that can touch how I am feeling, I can travel along on the notes and right out of the darkness. I can escape with it or flow with it but I can not live without it.
Today it helps mask what I am feeling...uncertainty, indecision, and no sense of belonging anywhere in particular. Not my old home, or my new home and what constitutes a home anyway? I have thought about moving, but to where? And for what reason? What would it prove? It's just the runaway syndrome and I believe it isn't all that uncommon.
Though many of you are missed, it is good to have this time away. Some well-meaning friends have tried to explain away my feelings, minimizing them without realizing it. You feel, I feel...I am just writing it down in my vulnerability and it isn't easy. Some have told other friends who should or how I should be handling my care.
Honestly, when it comes right down to it, I truly am the only one who has to live with the decision I make. That is reality when you live on your own.
Most of my friends and family who know me best just listen, send positive thoughts, tell me about their day, send words of hope or support or warmly encourage me to do what I feel is best. I know you are there if I need to think things through with someone and I am grateful and appreciate the net you have put underneath me just in case.
But as I walk out of the atrium towards my chemotherapy class in the Cancer Library on the main floor my monkey mind is reeling. I take a breath, close my eyes a moment and remind myself...I am NOT my cancer!
Does it consume me at times? Definitely!
Do I obsess over it? Sometimes, and I guess you can tell by the posts before this.
Do I feel it has changed my life? More than you can imagine.
Do I sometimes get emotional, excitable, or overly technical when I discuss it with others? Yes and believe me, I am working on controlling that to keep it to a minimum.
Will I let it run my life? Not any more than necessary but sometimes I may not have a choice in the matter.
But I have to live with it.
I already worked through the "If only I didn't have cancer...". Those times were rough but nothing changed because of my "if only" except my attitude. Time to quit wallowing and do what I can. And I will do whatever it takes to be as aggressive in my treatment as possible.
I don't ever want to look back and say, "If only I would have asked that question, suggested that treatment, requested that test, taken that big step..."
Wednesday, July 21, 2010
Rising up after a very low day Weds. July 21, 2010
Today I am going to the Clinic after I have a bite to eat. My plan is to participate in two cancer patient workshops, one dealing with releasing stress and renewing energy, the other breathing and visualization exercises to strengthen healing. Most importantly there will be music in the atrium again today and I love being there to listen to that around noon. I am also enjoying walking since everything is level and within a few blocks, you can take several routes to get to and from. Always fun to window shop as many things are pretty pricey around the area.
I took the street route again and walked up to the Gonda building. It isn't too warm as yet. People are bustling about, most in their walking shoes, and keeping up a good, brisk, healthy pace whether they are wearing business suits, scrubs, or casual shorts and t-shirts. Some whip right by me but I don't mind. I'm not in any hurry and enjoy just looking in the windows, noticing signs on businesses, and trying to figure out the different streets and locations.
When I arrived, I went up to the 10th floor, the Oncology department. Once again, the large space had many seats filled with various ages, some talking softly, some reading, some filling paperwork, and some just staring out the window, perusing the tops of the buildings surrounding Mayo. About halfway, I could see the glassed space especially used as a support space for women dealing with cancer where my first class would be held.
Well, won't be heading home tomorrow as I first planned and won't likely be home this weekend either. Luckily, I was able to get additional days here so I can keep my room and stay right downtown. Thank goodness for Priceline half price rate and the fact that all the hotels are used to having people extend their stay if they are Mayo patients. It is convenient and comfortable here.
The doctor didn't expect my tissue to arrive until the end of the week...looks like he will be right. Won't have results until Monday or Tuesday or know if I'll have treatments to choose from or more testing to do.
A series of storms are due in tomorrow so it's a good day to stay here and read, write and maybe work on my beading. If I decide to go to the "info about chemo" class at 1 tomorrow, I can walk using the covered skyways or take the Mayo shuttle from the hotel. The car can stay in covered parking. ;-)
It was a very warm day today but not unpleasant. The music in the atrium was pleasing, classes interesting, and the people I met enjoyable. I had late afternoon coffee in Barnes and Noble's 2nd floor "castle". Ah....that fairy tale feeling! LOL Saw Sorcerers Apprentice tonight and it was a wonderful way to end the day. Very entertaining!
People have been nice, I am seeing things around the area, learning, and I'm doing fine. Thank goodness for a fresh start and a day with fewer tears and more smiles.
I took the street route again and walked up to the Gonda building. It isn't too warm as yet. People are bustling about, most in their walking shoes, and keeping up a good, brisk, healthy pace whether they are wearing business suits, scrubs, or casual shorts and t-shirts. Some whip right by me but I don't mind. I'm not in any hurry and enjoy just looking in the windows, noticing signs on businesses, and trying to figure out the different streets and locations.
When I arrived, I went up to the 10th floor, the Oncology department. Once again, the large space had many seats filled with various ages, some talking softly, some reading, some filling paperwork, and some just staring out the window, perusing the tops of the buildings surrounding Mayo. About halfway, I could see the glassed space especially used as a support space for women dealing with cancer where my first class would be held.
Well, won't be heading home tomorrow as I first planned and won't likely be home this weekend either. Luckily, I was able to get additional days here so I can keep my room and stay right downtown. Thank goodness for Priceline half price rate and the fact that all the hotels are used to having people extend their stay if they are Mayo patients. It is convenient and comfortable here.
The doctor didn't expect my tissue to arrive until the end of the week...looks like he will be right. Won't have results until Monday or Tuesday or know if I'll have treatments to choose from or more testing to do.
A series of storms are due in tomorrow so it's a good day to stay here and read, write and maybe work on my beading. If I decide to go to the "info about chemo" class at 1 tomorrow, I can walk using the covered skyways or take the Mayo shuttle from the hotel. The car can stay in covered parking. ;-)
It was a very warm day today but not unpleasant. The music in the atrium was pleasing, classes interesting, and the people I met enjoyable. I had late afternoon coffee in Barnes and Noble's 2nd floor "castle". Ah....that fairy tale feeling! LOL Saw Sorcerers Apprentice tonight and it was a wonderful way to end the day. Very entertaining!
People have been nice, I am seeing things around the area, learning, and I'm doing fine. Thank goodness for a fresh start and a day with fewer tears and more smiles.
Tuesday, July 20, 2010
This is very hard day late afternoon July 20, 2010
Haven't really wanted to do anything today. I am tired, lacking good sleep, and emotionally strung so tight I cry over the least little thing.
I just received a call from Rikki at the American Cancer Society with an offer of help and support. After briefly explaining how they can be of help to me, she listened for just a few minutes as I shared how hard it is on the patient to have to struggle with all of this...not only the disease itself but with all that is asked of you when you have it. I had no idea how much I needed to share that with someone, to hear myself say it outloud.
She gave me the toll free number and some recommendations that may be helpful along the way financially, for support, to answer questions regarding my illness, whatever my needs are. As she was ending the call she said, "We are here 24/7 with help and support, whatever you need, we are here for you. Don't hesitate to call us. We want you to know more than anything else, Donalee, that you are not alone."
Trying to reign in my emotions enough to politely say good bye and thanks for her kindness, I was frantic to get off the phone. I knew that I wasn't going to be able to keep things at bay much longer. I broke into sobs which ripped through my chest and left me with no strength to hold me up. Just more waves of emotions held much too tightly that instantly came flooding out of me. I had no idea there was any more left and even now, as I write about it, I have to pause to let go of more. This is going to be a very, very hard day.
I AM alone and I don't mean physically here in Minnesota. The reality of my aloneness surfaced within a compassionate, innocent and loving phone conversation with a cancer caregiver. She KNEW what I felt! I have people who are close to me but they have lives of their own and aren't around to experience the fluctuations. There isn't anyone to just hold me for awhile so that I can feel comforted as I come apart at the seams. No pity is accepted here and that is not why I am sharing. This is what I live and I was doing pretty darn well dealing with it until this illness came into my life.
I don't want to upset anyone, cause them to worry or feel any discomfort or concern so I work hard to keep the positive side of me in the forefront even when the shadow of doubt is pressing hard. Being accused of being a Pollyanna was a badge I always wore proudly because she always saw the best in people and sitations. It is important to me to do the same. But when she was ill and faced a hardship she didn't think she could overcome, even she had to struggle. It took her friends and family to keep her going. It's what some of you have been trying to do, each in your own way, for me and I continue to be grateful.
I am alone with my thoughts right now and I can tell this has been needed for a long time. Being away from home for some reason has given me permission to come to terms with all I have been through these past few months. To release pent up anger, sadness, and other thoughts. I feel a sense of loss, grief, hurt, disillusionment, and at times feel frightened of the unknown. The facade of strength I regularly wear has completely crumbled today. I am not asking anyone to try to fix anything, psychoanalyze me, or make anything happen for me. None of these things is what I need. This is just honestly how it is for me today, right now.
A small crack in the mask I occasionally wear just opened and revealed many private thoughts. You received an opportunity to witness my vulnerability and see into my heart. Please treat it gently.
I just received a call from Rikki at the American Cancer Society with an offer of help and support. After briefly explaining how they can be of help to me, she listened for just a few minutes as I shared how hard it is on the patient to have to struggle with all of this...not only the disease itself but with all that is asked of you when you have it. I had no idea how much I needed to share that with someone, to hear myself say it outloud.
She gave me the toll free number and some recommendations that may be helpful along the way financially, for support, to answer questions regarding my illness, whatever my needs are. As she was ending the call she said, "We are here 24/7 with help and support, whatever you need, we are here for you. Don't hesitate to call us. We want you to know more than anything else, Donalee, that you are not alone."
Trying to reign in my emotions enough to politely say good bye and thanks for her kindness, I was frantic to get off the phone. I knew that I wasn't going to be able to keep things at bay much longer. I broke into sobs which ripped through my chest and left me with no strength to hold me up. Just more waves of emotions held much too tightly that instantly came flooding out of me. I had no idea there was any more left and even now, as I write about it, I have to pause to let go of more. This is going to be a very, very hard day.
I AM alone and I don't mean physically here in Minnesota. The reality of my aloneness surfaced within a compassionate, innocent and loving phone conversation with a cancer caregiver. She KNEW what I felt! I have people who are close to me but they have lives of their own and aren't around to experience the fluctuations. There isn't anyone to just hold me for awhile so that I can feel comforted as I come apart at the seams. No pity is accepted here and that is not why I am sharing. This is what I live and I was doing pretty darn well dealing with it until this illness came into my life.
I don't want to upset anyone, cause them to worry or feel any discomfort or concern so I work hard to keep the positive side of me in the forefront even when the shadow of doubt is pressing hard. Being accused of being a Pollyanna was a badge I always wore proudly because she always saw the best in people and sitations. It is important to me to do the same. But when she was ill and faced a hardship she didn't think she could overcome, even she had to struggle. It took her friends and family to keep her going. It's what some of you have been trying to do, each in your own way, for me and I continue to be grateful.
I am alone with my thoughts right now and I can tell this has been needed for a long time. Being away from home for some reason has given me permission to come to terms with all I have been through these past few months. To release pent up anger, sadness, and other thoughts. I feel a sense of loss, grief, hurt, disillusionment, and at times feel frightened of the unknown. The facade of strength I regularly wear has completely crumbled today. I am not asking anyone to try to fix anything, psychoanalyze me, or make anything happen for me. None of these things is what I need. This is just honestly how it is for me today, right now.
A small crack in the mask I occasionally wear just opened and revealed many private thoughts. You received an opportunity to witness my vulnerability and see into my heart. Please treat it gently.
But what do you Feel? early morning July 20, 2010
I am seated in front of a big picture window, blue sky above, sun beaming through and shining on a face with tears streaming down. I read an email from a dear friend and suddenly my head exploded with a box of feelings that have been strapped down pretty tightly until now.
I AM ANGRY!
Why, if I had to have this cancer, isn't it the more common every day variety? There would be clearer plans for treatment. I could just get on with it and my life instead of obsessing over every possible little hill and valley in the diagnosis.
Why did I have to discover it so early? I mean really...if I would have waited another year to get a mammogram after the four years already, so what? It would have been over a centimeter in size and something that would fit into the tumor guidelines better. Would have been easier for everyone, right? Heck, why not slip a few cancer cells into a couple lymph nodes and possibly escape to parts unknown. Then the experts would have a better idea what to do with me than they do now because I would be a Stage II or more. Not the lowly, confusing Stage Ib that I am.
Why did there have to be such confusion between the biopsy diagnosis and the surgery diagnosis? I know no one is perfect but the stress this has caused that I have tried so desperately to hide sometimes knocks me to my knees...and they aren't in the greatest shape either!
Why did I have to be triple positive, another unusual condition in ILC? OR am I?? Another unknown, another descrepancy, another night of little sleep, another couple days to wonder if everything will change again and I'll have a new set of circumstances to resign myself to and another treatment option I never knew existed.
Why did I have to overexpress HER2 or do I? All the experts I have seen feel I am healthy enough to take whatever I have to and continue on well in life with 5% to 25% chance of reoccurence depending on what I choose. Add to that drug choices that make me gain weight, get sick and tired and have uncontrollable hot flashes, to other drugs that could cause heart problems, to the most recent suggestion that causes excessive joint pain where there is arthritis or a degenerative condition like my knee. Gotta love these choices which everyone says beats the ultimate alternative we are all headed for eventually anyway. Some days, I am not so certain.
Any challenge in life is hard. Any disease you get without permission is hard. Anything you have no control over is hard. And sometimes feeling like you really don't want to deal with all of this anymore...that is hard to admit, but true.
All I know how to do, all I can do, is just hold onto myself tightly right now...and cry.
I AM ANGRY!
Why, if I had to have this cancer, isn't it the more common every day variety? There would be clearer plans for treatment. I could just get on with it and my life instead of obsessing over every possible little hill and valley in the diagnosis.
Why did I have to discover it so early? I mean really...if I would have waited another year to get a mammogram after the four years already, so what? It would have been over a centimeter in size and something that would fit into the tumor guidelines better. Would have been easier for everyone, right? Heck, why not slip a few cancer cells into a couple lymph nodes and possibly escape to parts unknown. Then the experts would have a better idea what to do with me than they do now because I would be a Stage II or more. Not the lowly, confusing Stage Ib that I am.
Why did there have to be such confusion between the biopsy diagnosis and the surgery diagnosis? I know no one is perfect but the stress this has caused that I have tried so desperately to hide sometimes knocks me to my knees...and they aren't in the greatest shape either!
Why did I have to be triple positive, another unusual condition in ILC? OR am I?? Another unknown, another descrepancy, another night of little sleep, another couple days to wonder if everything will change again and I'll have a new set of circumstances to resign myself to and another treatment option I never knew existed.
Why did I have to overexpress HER2 or do I? All the experts I have seen feel I am healthy enough to take whatever I have to and continue on well in life with 5% to 25% chance of reoccurence depending on what I choose. Add to that drug choices that make me gain weight, get sick and tired and have uncontrollable hot flashes, to other drugs that could cause heart problems, to the most recent suggestion that causes excessive joint pain where there is arthritis or a degenerative condition like my knee. Gotta love these choices which everyone says beats the ultimate alternative we are all headed for eventually anyway. Some days, I am not so certain.
Any challenge in life is hard. Any disease you get without permission is hard. Anything you have no control over is hard. And sometimes feeling like you really don't want to deal with all of this anymore...that is hard to admit, but true.
All I know how to do, all I can do, is just hold onto myself tightly right now...and cry.
On a Lighter Note... Evening, July 19, 2010
I needed a diversion and something soothing. After receiving some information on Rochester, I discovered on Monday evenings at 7:00 pm in one of the buildings on the Mayo campus, you can hear the sound of 56 carillon bells played by a local carilloneur. It is a special program each week and lasts for about 30 minutes.
Walking back to the Gorda Building, I wandered around the garden spaces until I found a wooden garden bench surrounded by beautiful flowers and trees on a carpet of lush green grass.
It was a beautiful evening and I noticed many others who have paused to listen from other marble or wooden benches that are strategically and attractively placed throughout the area. There is a lovely fountain nearby, flower beds shaped in waves, semi-circles and ovals, some on raised areas as well as in planters.
While listening, I noticed lots of conflict in the music, dissonance. Definitely fitting for what went on today and likely occurs for many people. There are all measures of expressions from the people surrounding me. I am certain there is calm reflected in my face but wouldn't be surprised to see confusion. A few people are quietly chatting but most are just listening, reverently.
Briefly the thought of not leaving until next week flows by. There are classes I was interested in attending, workshops that could be helpful, places to visit around the area, special spaces to just think for awhile and just "be". I know I can fill the time.
Quickly my thoughts go back with appreciation for the uniqueness in the music, the beauty of this space, and the blessing of being surrounded with blue skies and a cool warmth that is truly perfection!
I took an evening walk and covered about 6 or 8 blocks ending up at Barnes and Noble. When I went upstairs to where I could finally get my Starbucks for the day, the escalator took me up to a "castle". Being in an old theater building, it was a lighted set that surrounded most of the upstairs area and a welcome surprise that was exceptionally well done. Great place to spend some time and enjoy my coffee before a very pleasant walk back to the hotel.
No getting up at 6:00 am tomorrow which will be very nice. It will also be interesting to see what the day has in store for me. I'll let you know...;-)
Walking back to the Gorda Building, I wandered around the garden spaces until I found a wooden garden bench surrounded by beautiful flowers and trees on a carpet of lush green grass.
It was a beautiful evening and I noticed many others who have paused to listen from other marble or wooden benches that are strategically and attractively placed throughout the area. There is a lovely fountain nearby, flower beds shaped in waves, semi-circles and ovals, some on raised areas as well as in planters.
While listening, I noticed lots of conflict in the music, dissonance. Definitely fitting for what went on today and likely occurs for many people. There are all measures of expressions from the people surrounding me. I am certain there is calm reflected in my face but wouldn't be surprised to see confusion. A few people are quietly chatting but most are just listening, reverently.
Briefly the thought of not leaving until next week flows by. There are classes I was interested in attending, workshops that could be helpful, places to visit around the area, special spaces to just think for awhile and just "be". I know I can fill the time.
Quickly my thoughts go back with appreciation for the uniqueness in the music, the beauty of this space, and the blessing of being surrounded with blue skies and a cool warmth that is truly perfection!
I took an evening walk and covered about 6 or 8 blocks ending up at Barnes and Noble. When I went upstairs to where I could finally get my Starbucks for the day, the escalator took me up to a "castle". Being in an old theater building, it was a lighted set that surrounded most of the upstairs area and a welcome surprise that was exceptionally well done. Great place to spend some time and enjoy my coffee before a very pleasant walk back to the hotel.
No getting up at 6:00 am tomorrow which will be very nice. It will also be interesting to see what the day has in store for me. I'll let you know...;-)
Monday, July 19, 2010
My Visit to the Gorda Building July 19, 2010
I arrived at the Gorda Building of Mayo Clinic at 7:45 with my reports, CD's and slides as well as the usual drivers license and insurance card. I've got that routine down pat! The receptionist sent me up to the 10th floor south, top floor in the Gorda Building, where the cancer and hematology section is. I stood in a short line to check in with the nurse scheduler who gave me the official blue Mayo folder. It contained a seven page document to fill out which, she told me, would be scanned into the computer when I finished. I also received my schedule for the day after turning over all my materials. I was to meet with a member of the oncology team at 1:00 in this same location.
Before I could leave, they had me scheduled for another blood test. They sent me to the chemotherapy center to have it done more quickly, which was nice. Took four vials from me and I hardly knew he had put the needle into my arm. Good thing blood replenishes itself because with all they have taken from me in the last three months, I've got to be a quart low by now!
The best part of the blood draw was the chair though. It was leather and when I sat in it, I could swing my feet! Not a big deal for those of you closer to the floor, but for someone like me who is closer to the ceiling, it was truly liberating. When he finished, he put the cotton on it then wrapped the site with gauze telling me I could remove it in 15 minutes and I was on my way.
I stayed in that section for awhile perusing the cancer library of free materials that filled the center of the large area. I would guess the library area was about 20' by 20' with computers available to look up information too if you wanted to use them. Large double doors A-F were around the reception area and I'd find out later what that was like when I entered one of them.
It was about 9:30 now and I took one of the six large elevators back to the lobby. I had chosen to just stay at the Clinic and not walk back to the hotel. I first went into the gift shop, of course, but also because it had a small coffee shop for breakfast and lunch items. I decided on a raspberry yogurt parfait with granola and water which was exceptionally delicious since I hadn't eaten since 8 last night. I chose to take my items out into the huge atrium space, where different people were playing the grand piano, that was located in the lower lobby area. Outside the window, were tiered bulkheads full of flowers and other plantings over 100 feet long. There were tables outside to enjoy the sun and being outdoors.
I finished my breakfast and was content to listen to the music for awhile and look through some of the materials I had picked up earlier. Around 11:00, there was a notable change in music. A more professional pianist took her place on the bench and two clinic staff members appeared. Within minutes, a variety of music was performed, much to the delight of all of us that was more professional and wonderful to listen to. You could look up and see people looking over from the first and second floors, enraptured with what they were seeing and hearing.
Just a short time afterwards, a very kind woman from N. Minnesota sat down beside me and it wasn't long before we started talking. Her husband had been diagnosed with cancer of the tonsils and had 42 lymph nodes removed from his neck. He had been healthy up until he became annoyed with a persistent sore throat. After several misdiagnoses from area doctors, and being from Minnesota, she suggested they travel to Mayo where this rare disease was discovered. He was having his last radiation treatment today and they were finally headed back home for good. She asked why I was here so I shared with her. She talked about chemo, prescription assistance and expenses, some things they had experienced, the care received at Mayo, etc. A very pleasant person who I definitely wished well when the time came to pick up her prescriptions and then pick up her husband.
About 11:30, a couple patients/guests walked over to the piano and began to sing. The woman had mentioned it is open to everyone, so I wandered over too. They sang a variety of songs including "Music of the Night" from Phantom of the Opera (the instrumental versions I had heard while waiting in line upstairs this morning) and others like "Oklahoma", "I Could Have Danced All Night" along with "Amazing Grace", "The Rose", "Crazy" and others. Quite a variety. I did wander over and sang the last three songs they had chosen with them before they quit at noon. It was fun and the voices really sound lovely in the hall. The finale was "God Bless America" and just about everyone around sang on that one. It was amazing!
I decided to go up to the top floor at 12:30, even though I was early. I had my paperwork from this morning to turn in and I didn't want to be late. I went in just before 1:00 and had to laugh when I was measured again. This time I'm 5' 10 1/2"! I've lost an inch, gained an inch and now lost a 1/2 inch! LOL Blood pressure was slightly elevated and I wasn't surprised any more than Katie, the oncology nurse practitioner I was introduced to. Even my temperature was slightly higher but ok.
Katie talked with me about why I was there, what had occured, my testing results, the diagnoses, the treatment options, and where we stand now. She did an exam and was very open, comforting, and informative plus...she reviewed my pathology reports and was disturbed when she saw "Hormone Receptor Positive (reported)"; "HER2 Expression Positive (reported)". She placed a call to Hackley Hospital and when her call was returned, she asked if they had tested my surgery tissue to verify again that is was HR positive and HER2 positive...they did not. They had just accepted the previous results from the biopsy. This concerned us both since my diagnosis had changed with the surgery maybe this would too? It would matter if I wasn't HER2 positive so she marked that for the attention of the doctor. Katie brought back a huge book that is given to all breast cancer patients at Mayo, donated by a Breast Cancer support group, which was very kind.
About 10 minutes after Katie left, Dr. G came in, the oncologist on staff today. He reminded me of a older Dr. B right away. He was definitely all business and I found out later, he is a recognized Hematology specialist (Dr. B was a Hematologist first, oncologist second). He even started with the graph that Dr. B had showed me during my first visit with him, but I did understand what he was trying to tell me unlike last time. He asked if I had had an oncotype Dx test, I said "no" because I was HER2 positive. But my present oncologist was considering it except the specimens are all here. He then spoke to me about my little "gray area" problem. He talked about Tamoxifen, he prefers another drug and then showed me some results from clinical trials being performed there comparing the results of Tamoxifen to this Femara drug.
Next he quoted the NCCN report BUT at least he said it was a guideline and isn't necessarily what everyone follows if they feel there are reasons not to. Next we discussed HER2 and it being a factor. He questioned whether or not I actually am HER2 positive since they did not verify it by testing the tissue after surgery. He definitely wants to get the tissue and have a test run to see if I am since many ILC patients are not (although he did admit he had a patient this morning go through the same thing and she is positive so it is possible).
He did feel I was a good candidate for TCH chemotherapy program if my HER2 status is still positive. He feels an aromatase inhibitor would be better than Tamoxifen for me and more effective, and we went over the clinical data and the side effects. OMG...another option, another decision and the side effects for me could be debilitating in some ways with AI. I will admit...he is knowledgable,professional.
The meeting ended with him handing me his suggestions and percentages for reoccurance that we discussed and he stated that he would be checking with pathology to see if Hackley Hospital had sent the tissue specimen as well as the slides. IF they did, he would have them get to work right away to confirm that I was HER2 positive. IF the tissue was not in the package, Hackley would have to send the specimen by courier to the Clinic and it would not likely be available for testing until next week. NEXT WEEK?
As he headed out, he said, "we'll just have to check and see what you were sent with. It was nice meeting you, we'll see what pathology says," and off he went. I went to the receptionist to find out if I was supposed to call them or if they would call me. She wasn't sure since he hadn't written anything on my chart yet, so she gave me his receptionists number so I could call her tomorrow.
Needless to say, just left me with loose ends. I know he is highly regarded in his field of hematology. It must be a bit disconcerting for him to have to deal with someone who has no "fresh" test results and just needs a second opinion.
At the present time, this visit has just created another round of uncertainty sprinkled with frustration and indicated there may be another new treatment option on the horizon. Oh well...none of this has been easy so far. Why should this be any different?
I'll worry about this tomorrow...
Before I could leave, they had me scheduled for another blood test. They sent me to the chemotherapy center to have it done more quickly, which was nice. Took four vials from me and I hardly knew he had put the needle into my arm. Good thing blood replenishes itself because with all they have taken from me in the last three months, I've got to be a quart low by now!
The best part of the blood draw was the chair though. It was leather and when I sat in it, I could swing my feet! Not a big deal for those of you closer to the floor, but for someone like me who is closer to the ceiling, it was truly liberating. When he finished, he put the cotton on it then wrapped the site with gauze telling me I could remove it in 15 minutes and I was on my way.
I stayed in that section for awhile perusing the cancer library of free materials that filled the center of the large area. I would guess the library area was about 20' by 20' with computers available to look up information too if you wanted to use them. Large double doors A-F were around the reception area and I'd find out later what that was like when I entered one of them.
It was about 9:30 now and I took one of the six large elevators back to the lobby. I had chosen to just stay at the Clinic and not walk back to the hotel. I first went into the gift shop, of course, but also because it had a small coffee shop for breakfast and lunch items. I decided on a raspberry yogurt parfait with granola and water which was exceptionally delicious since I hadn't eaten since 8 last night. I chose to take my items out into the huge atrium space, where different people were playing the grand piano, that was located in the lower lobby area. Outside the window, were tiered bulkheads full of flowers and other plantings over 100 feet long. There were tables outside to enjoy the sun and being outdoors.
I finished my breakfast and was content to listen to the music for awhile and look through some of the materials I had picked up earlier. Around 11:00, there was a notable change in music. A more professional pianist took her place on the bench and two clinic staff members appeared. Within minutes, a variety of music was performed, much to the delight of all of us that was more professional and wonderful to listen to. You could look up and see people looking over from the first and second floors, enraptured with what they were seeing and hearing.
Just a short time afterwards, a very kind woman from N. Minnesota sat down beside me and it wasn't long before we started talking. Her husband had been diagnosed with cancer of the tonsils and had 42 lymph nodes removed from his neck. He had been healthy up until he became annoyed with a persistent sore throat. After several misdiagnoses from area doctors, and being from Minnesota, she suggested they travel to Mayo where this rare disease was discovered. He was having his last radiation treatment today and they were finally headed back home for good. She asked why I was here so I shared with her. She talked about chemo, prescription assistance and expenses, some things they had experienced, the care received at Mayo, etc. A very pleasant person who I definitely wished well when the time came to pick up her prescriptions and then pick up her husband.
About 11:30, a couple patients/guests walked over to the piano and began to sing. The woman had mentioned it is open to everyone, so I wandered over too. They sang a variety of songs including "Music of the Night" from Phantom of the Opera (the instrumental versions I had heard while waiting in line upstairs this morning) and others like "Oklahoma", "I Could Have Danced All Night" along with "Amazing Grace", "The Rose", "Crazy" and others. Quite a variety. I did wander over and sang the last three songs they had chosen with them before they quit at noon. It was fun and the voices really sound lovely in the hall. The finale was "God Bless America" and just about everyone around sang on that one. It was amazing!
I decided to go up to the top floor at 12:30, even though I was early. I had my paperwork from this morning to turn in and I didn't want to be late. I went in just before 1:00 and had to laugh when I was measured again. This time I'm 5' 10 1/2"! I've lost an inch, gained an inch and now lost a 1/2 inch! LOL Blood pressure was slightly elevated and I wasn't surprised any more than Katie, the oncology nurse practitioner I was introduced to. Even my temperature was slightly higher but ok.
Katie talked with me about why I was there, what had occured, my testing results, the diagnoses, the treatment options, and where we stand now. She did an exam and was very open, comforting, and informative plus...she reviewed my pathology reports and was disturbed when she saw "Hormone Receptor Positive (reported)"; "HER2 Expression Positive (reported)". She placed a call to Hackley Hospital and when her call was returned, she asked if they had tested my surgery tissue to verify again that is was HR positive and HER2 positive...they did not. They had just accepted the previous results from the biopsy. This concerned us both since my diagnosis had changed with the surgery maybe this would too? It would matter if I wasn't HER2 positive so she marked that for the attention of the doctor. Katie brought back a huge book that is given to all breast cancer patients at Mayo, donated by a Breast Cancer support group, which was very kind.
About 10 minutes after Katie left, Dr. G came in, the oncologist on staff today. He reminded me of a older Dr. B right away. He was definitely all business and I found out later, he is a recognized Hematology specialist (Dr. B was a Hematologist first, oncologist second). He even started with the graph that Dr. B had showed me during my first visit with him, but I did understand what he was trying to tell me unlike last time. He asked if I had had an oncotype Dx test, I said "no" because I was HER2 positive. But my present oncologist was considering it except the specimens are all here. He then spoke to me about my little "gray area" problem. He talked about Tamoxifen, he prefers another drug and then showed me some results from clinical trials being performed there comparing the results of Tamoxifen to this Femara drug.
Next he quoted the NCCN report BUT at least he said it was a guideline and isn't necessarily what everyone follows if they feel there are reasons not to. Next we discussed HER2 and it being a factor. He questioned whether or not I actually am HER2 positive since they did not verify it by testing the tissue after surgery. He definitely wants to get the tissue and have a test run to see if I am since many ILC patients are not (although he did admit he had a patient this morning go through the same thing and she is positive so it is possible).
He did feel I was a good candidate for TCH chemotherapy program if my HER2 status is still positive. He feels an aromatase inhibitor would be better than Tamoxifen for me and more effective, and we went over the clinical data and the side effects. OMG...another option, another decision and the side effects for me could be debilitating in some ways with AI. I will admit...he is knowledgable,professional.
The meeting ended with him handing me his suggestions and percentages for reoccurance that we discussed and he stated that he would be checking with pathology to see if Hackley Hospital had sent the tissue specimen as well as the slides. IF they did, he would have them get to work right away to confirm that I was HER2 positive. IF the tissue was not in the package, Hackley would have to send the specimen by courier to the Clinic and it would not likely be available for testing until next week. NEXT WEEK?
As he headed out, he said, "we'll just have to check and see what you were sent with. It was nice meeting you, we'll see what pathology says," and off he went. I went to the receptionist to find out if I was supposed to call them or if they would call me. She wasn't sure since he hadn't written anything on my chart yet, so she gave me his receptionists number so I could call her tomorrow.
Needless to say, just left me with loose ends. I know he is highly regarded in his field of hematology. It must be a bit disconcerting for him to have to deal with someone who has no "fresh" test results and just needs a second opinion.
At the present time, this visit has just created another round of uncertainty sprinkled with frustration and indicated there may be another new treatment option on the horizon. Oh well...none of this has been easy so far. Why should this be any different?
I'll worry about this tomorrow...
Sunday, July 18, 2010
Land, Sea, Blue Skies, Sunshine and Rochester July 18, 2010
First, I want to thank my family for supporting my decision. I know you each offered, but going it alone really is my best decision. I am the one that ultimately has to live with what I choose. You know I will consult with each of you to hear your thoughts before I agree to anything anyway because your opinion is important to me.
Things went quite smoothly this morning. I'll admit, my sleep was sporatic because I didn't want to sleep through my alarm. But I was up by 6:00 am and out the door headed towards Ludington by 7:00 as planned. It was a very pleasant drive north with minimal traffic and light but cloudy skies.
When I arrived at the Badger loading area, first was the short line to meet with the attendant who was bright and cheerful, checking our names off the list, reminding us of the rules for the trip, and especially to remember to leave our keys in our unlocked car.
I packed up my computer and IPod and headed up the two flights of stairs to the first level. I signed up for internet so I could get my note written to everyone first thing so I wouldn't forget. At 9:00, the Badger was on it's way out into Lake Michigan, which was pretty smooth and a great ride.
Walked around the ship a bit then went aft to sit outside on the second level and read for awhile. Saw it darken over Michigan and thought you might be in for some fun weather, which one of my friends comfirmed. And here I was enjoying some sunshine! LOL
At about 11:30, Michigan time, we did have a rumble of thunder, but no one mentioned seeing any lightning at the time. I was seated inside upstairs by the window in the closed galley where I could continue reading when it started to rain. It wasn't very heavy because people were walking outside in their hoodies after a bit. It had stopped within the half hour.
As we pulled into Manitowoc, the sky was clearing, the blue sky proudly showing itself along with the sun. I looked north towards Green Bay and was grateful I had decided not to take the interstate north but go west to Rochester instead. Looked like they were in for some serious storms!
The skipper docked the ship beautifully with hardly a bump. Took about 15 minutes to unload us all, but my car was only a short walk away and ready for me when I got off the ship. Jumped in, turned on the air, checked the map and headed off on highway 10, at first, to the interstate. I just felt it was going to be a GREAT trip!
Traveled north out of town to the exit for state route 10 to Appleton, then south to Oshkosh, west on 41 then I-90 to La Crosse, the last city for me in Wisconsin and the site of the east bank of the Mississippi River. All the way across I enjoyed classical music from the University of Wisconsin public radio station, drove through quaint little towns, lush green rolling hills, classically perfect dairy farms complete with contented cows, unique barns, amish buggies, accompanied the entire distance by a beautiful blue sky, light fluffy white cumulus clouds and a bright, warm sun! I had a little rain spit on me once about half way across but it didn't even clean the car! Darn!
When I reached the Minnesota rest area on the west bank of the Mississippi, I got out for awhile to stretch, but also to enjoy the beauty of Mark Twain's favorite river. There were boaters enjoying it, a family picnicing on the hillside, and people walking all over taking pictures and relishing the beauty of the scene. I remembered the tree covered mountainous area I was about to continue through and felt a twinge of homesickness for a brief moment. A few more minutes to reflect within the scene and I was ready to go.
Only 60 miles remain and it looked like I was going to arrive near the time I had estimated, 7:30 EDT, 6:30 CDT. When I approached Rochester, I fired up my Verizon Navigator on my phone and checked the hotel address I had already placed within. As I drove into town, it became pretty obvious where the Mayo Clinic Campus was and I was in awe. My hotel is just 2 1/2 blocks away and an easy walk for me. I am on the 7th floor and look out over the river that flows through Rochester. My room is comfortable and will be my home away from home for several days.
The trip was great, the drive entertaining and smooth, music filled the car from classical Wisconsin to the oldies in Minnesota, the route was quite easy, and the destination a pleasant place to be. It is good to be here, safe and sound.
And I'd do it all again in a heartbeat...
Things went quite smoothly this morning. I'll admit, my sleep was sporatic because I didn't want to sleep through my alarm. But I was up by 6:00 am and out the door headed towards Ludington by 7:00 as planned. It was a very pleasant drive north with minimal traffic and light but cloudy skies.
When I arrived at the Badger loading area, first was the short line to meet with the attendant who was bright and cheerful, checking our names off the list, reminding us of the rules for the trip, and especially to remember to leave our keys in our unlocked car.
I packed up my computer and IPod and headed up the two flights of stairs to the first level. I signed up for internet so I could get my note written to everyone first thing so I wouldn't forget. At 9:00, the Badger was on it's way out into Lake Michigan, which was pretty smooth and a great ride.
Walked around the ship a bit then went aft to sit outside on the second level and read for awhile. Saw it darken over Michigan and thought you might be in for some fun weather, which one of my friends comfirmed. And here I was enjoying some sunshine! LOL
At about 11:30, Michigan time, we did have a rumble of thunder, but no one mentioned seeing any lightning at the time. I was seated inside upstairs by the window in the closed galley where I could continue reading when it started to rain. It wasn't very heavy because people were walking outside in their hoodies after a bit. It had stopped within the half hour.
As we pulled into Manitowoc, the sky was clearing, the blue sky proudly showing itself along with the sun. I looked north towards Green Bay and was grateful I had decided not to take the interstate north but go west to Rochester instead. Looked like they were in for some serious storms!
The skipper docked the ship beautifully with hardly a bump. Took about 15 minutes to unload us all, but my car was only a short walk away and ready for me when I got off the ship. Jumped in, turned on the air, checked the map and headed off on highway 10, at first, to the interstate. I just felt it was going to be a GREAT trip!
Traveled north out of town to the exit for state route 10 to Appleton, then south to Oshkosh, west on 41 then I-90 to La Crosse, the last city for me in Wisconsin and the site of the east bank of the Mississippi River. All the way across I enjoyed classical music from the University of Wisconsin public radio station, drove through quaint little towns, lush green rolling hills, classically perfect dairy farms complete with contented cows, unique barns, amish buggies, accompanied the entire distance by a beautiful blue sky, light fluffy white cumulus clouds and a bright, warm sun! I had a little rain spit on me once about half way across but it didn't even clean the car! Darn!
When I reached the Minnesota rest area on the west bank of the Mississippi, I got out for awhile to stretch, but also to enjoy the beauty of Mark Twain's favorite river. There were boaters enjoying it, a family picnicing on the hillside, and people walking all over taking pictures and relishing the beauty of the scene. I remembered the tree covered mountainous area I was about to continue through and felt a twinge of homesickness for a brief moment. A few more minutes to reflect within the scene and I was ready to go.
Only 60 miles remain and it looked like I was going to arrive near the time I had estimated, 7:30 EDT, 6:30 CDT. When I approached Rochester, I fired up my Verizon Navigator on my phone and checked the hotel address I had already placed within. As I drove into town, it became pretty obvious where the Mayo Clinic Campus was and I was in awe. My hotel is just 2 1/2 blocks away and an easy walk for me. I am on the 7th floor and look out over the river that flows through Rochester. My room is comfortable and will be my home away from home for several days.
The trip was great, the drive entertaining and smooth, music filled the car from classical Wisconsin to the oldies in Minnesota, the route was quite easy, and the destination a pleasant place to be. It is good to be here, safe and sound.
And I'd do it all again in a heartbeat...
Thursday, July 15, 2010
Sad, but the way it is July 15, 2010
Tonight I feel a little sad.
I will be catching up on an email I should have responded to two days ago because of how very important the family is to me. Though I know they will be understanding and forgiving, it makes me sad tonight.
I have heard many reasons why I should not be taking the trip to Mayo that I am taking this week such as I shouldn't go alone; it will be too much for me to handle; it is too overwhelming; it would so much better if I had someone with me; however can I keep track of things, etc. That makes me sad tonight too.
I have listened to many of my friends this week who have had disappointments, difficulties with their relationships or in their families, basically just needed someone to listen. My problem is that I should just listen and I do BUT... I feel I have to help fix things. I want them to be happy and have things work more smoothly. I keep trying to think of something that will help in some way, even a small way, or that will give them some peace of mind for awhile. I need to work on just listening rather than taking it on myself. I can't even take care of my own life and needs right now. It makes me sad tonight too.
I am questioning my own friendships and relationships. Wondering if they are as secure as I think they are. Wondering how much damage this illness will do to our friendship, how much pressure, if I am respecting their feelings and needs, if I share too much or too little, just what the boundaries are here, what they need or want from me...am I sensitive to that? Admitting that I have this sense of insecurity and fear of abandonment makes me sad tonight too.
So for now, I am just going to accept being sad for all these things I can't do anything about except just let them go. Everything has a way of working out. Some of these problems won't be problems tomorrow, some of them I will have an idea how to handle tomorrow, and others I will just choose to let go...tomorrow.
Likely, I'll no longer be sad.
I will be catching up on an email I should have responded to two days ago because of how very important the family is to me. Though I know they will be understanding and forgiving, it makes me sad tonight.
I have heard many reasons why I should not be taking the trip to Mayo that I am taking this week such as I shouldn't go alone; it will be too much for me to handle; it is too overwhelming; it would so much better if I had someone with me; however can I keep track of things, etc. That makes me sad tonight too.
I have listened to many of my friends this week who have had disappointments, difficulties with their relationships or in their families, basically just needed someone to listen. My problem is that I should just listen and I do BUT... I feel I have to help fix things. I want them to be happy and have things work more smoothly. I keep trying to think of something that will help in some way, even a small way, or that will give them some peace of mind for awhile. I need to work on just listening rather than taking it on myself. I can't even take care of my own life and needs right now. It makes me sad tonight too.
I am questioning my own friendships and relationships. Wondering if they are as secure as I think they are. Wondering how much damage this illness will do to our friendship, how much pressure, if I am respecting their feelings and needs, if I share too much or too little, just what the boundaries are here, what they need or want from me...am I sensitive to that? Admitting that I have this sense of insecurity and fear of abandonment makes me sad tonight too.
So for now, I am just going to accept being sad for all these things I can't do anything about except just let them go. Everything has a way of working out. Some of these problems won't be problems tomorrow, some of them I will have an idea how to handle tomorrow, and others I will just choose to let go...tomorrow.
Likely, I'll no longer be sad.
Wednesday, July 14, 2010
Peace of Mind Begins with Faith in your Medical Oncologist July 14, 2010
Yesterday and today I have been collecting records: my clinical records from my surgeon and oncologist(s), my MRI CD from North Ottawa Hospital, and tomorrow I pick up my mammo films from Mercy Hospital & Lakes Clinic, then return to JFCCC and pick up my specimen slides and glass. My 3 month medical adventure reduced to forms, films and glass slides!
At 4:00 today I met the oncologist who was actually my first choice, Dr. A. I wasn't sure exactly how this would go since I had just met with one of her colleagues the day before. She introduced herself, then I introduced Carol and we were ready to go. I stated I had seen Dr. B the day before and that I had told him I would be seeing her before deciding who I hoped to work with.
She started her time by asking me about me, not my cancer. It wasn't long before she knew about my late husband Jim and his death, my mom's death, moving, retirement, being here, how I have adjusted, my health over the years, how I've been sleeping, feeling...she had an overview of some of my life, at especially the last 8 years, before I realized it! Then she performed her own exam. I felt at ease the entire time.
Dr. A left so I could get my shirt back on and gave Carol and I a couple minutes to compare notes. When she returned, she had my path reports and wanted to go over them with me. She had highlighted things to focus on and shared her thoughts. It was like hearing some of it for the first time. When she spoke of the Nottingham Score, she noted that it was the reviewers opinion when assigning each of the numbers (1-9). That Grade isn't as secure as one would believe. Again, I was in the gray area there too so it helped to know it wasn't an exact science.
When she got to the second page where the hormone receptors and HER2 were listed, she noted they were both positive, the first good, the second not so good. Then she began to confirm some of what I had discovered and elaborated without me asking or saying anything! She noted I have a small tumor and that it's a gray area. BUT she also stated that recent findings indicate that it isn't the size of the tumor but its biological make up that seems to determine the rate of reoccurance. She believes we have to seriously consider that when deciding what is the best kind of treatment to offer. At the same time, she stressed that the patient, their health, and other factors play an important part in that decision as well.
She brought up the Oncotype Dx test that I had read about and said that she would have ordered this if I wasn't already going to Mayo Clinic. I told her I didn't think I could have the test because it is usually used with HER2 negative patients. She said it would work in my case because it makes things pretty clear whether or not you do chemo/herceptin/rads or Tamoxifen/radiation. That wasn't brought up previously.
Since I am going to Mayo Clinic, which she definitely is in support of, she stated she is very interested in hearing their thoughts regarding my path reports and their testing. She genuinely seemed excited with the opportunity to review and learn from their research. She acknowledged that people like me are in the "gray area" and that my case is rare in a smaller facility. Dr. A reminded me that is likely they will suggest a plan, maybe more than one, and just like my present situation, will leave it up to me to decide. It's just the way it is.
One of the reports from MD Anderson in Texas she quoted, was the same I had discovered on line and asked questions about in my previous consultation. She mentioned it because she has a concern regarding HER2. "If it is not addressed, it can increase the possibility of reoccurance to 25%, and that is too much for me." Too much for me too!
Dr. A said she felt I would be an excellent candidate for TCH which avoids the harsh Adriamycin and that she had no doubt I could tolerate it quite well. I had told Carol earlier I was going to ask about the possibility of that protocol IF I ended up having the chemo treatment offered to me. We talked about all the side effects from everything and she stated exactly how she would guide and observe and what would happen if I had any negative reactions. We also talked about Tamoxifen and I stated that taking a pill is a great thing, but had read it was basically ineffective against HER2 and she agreed that the general opinion.
Dr. A was called out of the room for a couple minutes and Carol pointed to the words at the top of her note pad..."She is the ONE!" I wholeheartedly agreed! If I have to endure 1-5 years with someone, she is the one I know I could walk this road with and have complete confidence in. I felt this huge weight come off my shoulders. She actually understands my concerns, has addressed just about every one of them and I didn't even have to bring them up.
When she returned and we were winding up our conversation, I looked her right in the eye (kind of important to me as my friends know well) "I feel very comfortable with you and would like to know if you would be willing to work with me for the next five or however many years. Would that be acceptable to you?" She had a very warm smile and without hesitation said, "Definitely"
NOW I have my medical oncologist and my chosen family sister feels as secure in that decision as I do. I already feel an incredible sense of relief that I can't begin to describe to you. Let's just say, for a person who struggles to get to sleep at night, I have absolutely NO DOUBT, that after this decision today, tonight...I will sleep VERY well!
At 4:00 today I met the oncologist who was actually my first choice, Dr. A. I wasn't sure exactly how this would go since I had just met with one of her colleagues the day before. She introduced herself, then I introduced Carol and we were ready to go. I stated I had seen Dr. B the day before and that I had told him I would be seeing her before deciding who I hoped to work with.
She started her time by asking me about me, not my cancer. It wasn't long before she knew about my late husband Jim and his death, my mom's death, moving, retirement, being here, how I have adjusted, my health over the years, how I've been sleeping, feeling...she had an overview of some of my life, at especially the last 8 years, before I realized it! Then she performed her own exam. I felt at ease the entire time.
Dr. A left so I could get my shirt back on and gave Carol and I a couple minutes to compare notes. When she returned, she had my path reports and wanted to go over them with me. She had highlighted things to focus on and shared her thoughts. It was like hearing some of it for the first time. When she spoke of the Nottingham Score, she noted that it was the reviewers opinion when assigning each of the numbers (1-9). That Grade isn't as secure as one would believe. Again, I was in the gray area there too so it helped to know it wasn't an exact science.
When she got to the second page where the hormone receptors and HER2 were listed, she noted they were both positive, the first good, the second not so good. Then she began to confirm some of what I had discovered and elaborated without me asking or saying anything! She noted I have a small tumor and that it's a gray area. BUT she also stated that recent findings indicate that it isn't the size of the tumor but its biological make up that seems to determine the rate of reoccurance. She believes we have to seriously consider that when deciding what is the best kind of treatment to offer. At the same time, she stressed that the patient, their health, and other factors play an important part in that decision as well.
She brought up the Oncotype Dx test that I had read about and said that she would have ordered this if I wasn't already going to Mayo Clinic. I told her I didn't think I could have the test because it is usually used with HER2 negative patients. She said it would work in my case because it makes things pretty clear whether or not you do chemo/herceptin/rads or Tamoxifen/radiation. That wasn't brought up previously.
Since I am going to Mayo Clinic, which she definitely is in support of, she stated she is very interested in hearing their thoughts regarding my path reports and their testing. She genuinely seemed excited with the opportunity to review and learn from their research. She acknowledged that people like me are in the "gray area" and that my case is rare in a smaller facility. Dr. A reminded me that is likely they will suggest a plan, maybe more than one, and just like my present situation, will leave it up to me to decide. It's just the way it is.
One of the reports from MD Anderson in Texas she quoted, was the same I had discovered on line and asked questions about in my previous consultation. She mentioned it because she has a concern regarding HER2. "If it is not addressed, it can increase the possibility of reoccurance to 25%, and that is too much for me." Too much for me too!
Dr. A said she felt I would be an excellent candidate for TCH which avoids the harsh Adriamycin and that she had no doubt I could tolerate it quite well. I had told Carol earlier I was going to ask about the possibility of that protocol IF I ended up having the chemo treatment offered to me. We talked about all the side effects from everything and she stated exactly how she would guide and observe and what would happen if I had any negative reactions. We also talked about Tamoxifen and I stated that taking a pill is a great thing, but had read it was basically ineffective against HER2 and she agreed that the general opinion.
Dr. A was called out of the room for a couple minutes and Carol pointed to the words at the top of her note pad..."She is the ONE!" I wholeheartedly agreed! If I have to endure 1-5 years with someone, she is the one I know I could walk this road with and have complete confidence in. I felt this huge weight come off my shoulders. She actually understands my concerns, has addressed just about every one of them and I didn't even have to bring them up.
When she returned and we were winding up our conversation, I looked her right in the eye (kind of important to me as my friends know well) "I feel very comfortable with you and would like to know if you would be willing to work with me for the next five or however many years. Would that be acceptable to you?" She had a very warm smile and without hesitation said, "Definitely"
NOW I have my medical oncologist and my chosen family sister feels as secure in that decision as I do. I already feel an incredible sense of relief that I can't begin to describe to you. Let's just say, for a person who struggles to get to sleep at night, I have absolutely NO DOUBT, that after this decision today, tonight...I will sleep VERY well!
Monday, July 12, 2010
Gathering the Computerized "Paper Trail" July 12, 2010
I looked at the list of things required by Mayo Clinic that I needed to gather and was uncertain of where to begin. When all else fails, call Dr. P's office and just as I suspected, they knew exactly what to tell me and what I needed to do.
When I told them I was getting a second opinion at Mayo, they told me not to worry and they would gather all that I needed from their office. It would be ready for me on Tuesday. Then they suggested I call the other places where my mammograms were done, my MRI was done, and finally the oncologist and/or the hospital to take care of my slides, glass, etc. That was my mission today. All contacts spoken with all arrangements. It was much easier than I first thought, thank goodness!
Everyone was VERY supportive and helpful, times were arranged throughout the week to pick up my reports etc, and it did not become the big overwhelming problem it first seemed to be.
Most of the friends and professionals that I have spoken to regarding this second opinion have been supportive. I sense a few believe it is just a waste of money and precious time and I should just take what the oncologist said and get on with it. Sometimes I think it would be easier on them because they wouldn't have to deal with it or me anymore.
I wonder if they would say the same if it were their sister or mother or daughter or wife or partner? I wonder what they would say if they themselves were facing this decision?
Believe me my friends, if it were THAT easy to decide, that cut and dried and obvious, I wouldn't be taking my "vacation" in Minnesota next week!
When I told them I was getting a second opinion at Mayo, they told me not to worry and they would gather all that I needed from their office. It would be ready for me on Tuesday. Then they suggested I call the other places where my mammograms were done, my MRI was done, and finally the oncologist and/or the hospital to take care of my slides, glass, etc. That was my mission today. All contacts spoken with all arrangements. It was much easier than I first thought, thank goodness!
Everyone was VERY supportive and helpful, times were arranged throughout the week to pick up my reports etc, and it did not become the big overwhelming problem it first seemed to be.
Most of the friends and professionals that I have spoken to regarding this second opinion have been supportive. I sense a few believe it is just a waste of money and precious time and I should just take what the oncologist said and get on with it. Sometimes I think it would be easier on them because they wouldn't have to deal with it or me anymore.
I wonder if they would say the same if it were their sister or mother or daughter or wife or partner? I wonder what they would say if they themselves were facing this decision?
Believe me my friends, if it were THAT easy to decide, that cut and dried and obvious, I wouldn't be taking my "vacation" in Minnesota next week!
Saturday, July 10, 2010
Second Opinion from Mayo Clinic 7/9/2010
I was contacted on Friday by Mayo Clinic. The oncology staff has reviewed my information and offered me an appointment for further testing, review of my biopsy and surgical materials, etc. I had requested a second opinion from them as well as a suggested plan for treatment. It is also comforting to know that my insurance company is in support of my request and funding assistance will be there. Whew!
I have an appointment at Mayo Clinic, in Rochester, Minnesota on Monday, July 19 and I start at 8:00am for my first full day. The scheduling nurse said to expect to be there at least four days, so I am looking at this as my summer vacation trip.
I will take the Ludington/Manitowoc carferry across to Wisconsin and drive the 279 miles west to Rochester, which is about 75 miles south of Minneapolis/St. Paul. I have driven that distance before both with my late husband and twice on my own. It is pleasant driving across dairy land and rolling hills and a pretty easy drive.
I know this may seem like an odd kind of thing to be happy about and consider a vacation...to most people it would be. But this will bring me peace of mind along with the opportunity to retrace tracks filled with good memories. I believe the people at the Clinic will help me make the best decision regarding my treatment so I can get on with living my life.
Whether it ends up being the Tamoxifen regimen I have already been offered or the chemo, Herceptin, and radiation I had previously expected or maybe even something unexpected, I know a lot of research, experience, testing and thought will have gone into the plan that will be recommended...
And THAT I can LIVE with!
I have an appointment at Mayo Clinic, in Rochester, Minnesota on Monday, July 19 and I start at 8:00am for my first full day. The scheduling nurse said to expect to be there at least four days, so I am looking at this as my summer vacation trip.
I will take the Ludington/Manitowoc carferry across to Wisconsin and drive the 279 miles west to Rochester, which is about 75 miles south of Minneapolis/St. Paul. I have driven that distance before both with my late husband and twice on my own. It is pleasant driving across dairy land and rolling hills and a pretty easy drive.
I know this may seem like an odd kind of thing to be happy about and consider a vacation...to most people it would be. But this will bring me peace of mind along with the opportunity to retrace tracks filled with good memories. I believe the people at the Clinic will help me make the best decision regarding my treatment so I can get on with living my life.
Whether it ends up being the Tamoxifen regimen I have already been offered or the chemo, Herceptin, and radiation I had previously expected or maybe even something unexpected, I know a lot of research, experience, testing and thought will have gone into the plan that will be recommended...
And THAT I can LIVE with!
Wednesday, July 7, 2010
It's been 4 weeks since surgery. Why wait any longer? 7/7/2010
A very thoughtful and caring friend expressed concern today that I was waiting too long to get started on my treatments and it might be detrimental to me. Since it's already been four weeks since my surgery, it may seem so. Most have that long to heal from surgery before starting any regime, even though my oncologist was eager to start last week.
With my nose in more material than anyone would ever want to peruse, the conclusion is that I have time. Most doctors say 12 weeks is the MAX to wait until the start of chemo and I have NO INTENTION of waiting that long.
Next week, the 13th, I will go see the oncologist and have a heart to heart talk with all my documents, questions, and concerns. I will be requesting an oncotype Dx test, which determines just how aggressive my cells are. This will also help both of us decide whether I am a candidate for and would benefit from chemo and Herceptin vs just Tamoxifen, which I would likely be on later anyway. I want to do all that I can to avoid going down this road again!
When I talked with Mayo Clinic, they were also interested in having a bone scan done, since my M (metatastic rating) was "X" which means "no data to determine". It would let me know if any of those little cells might have snuck off somewhere else without my knowledge. It is just under consideration and may not be necessary at all after they see my records and reports.
I know I have a small mass...I know I am lucky beyond words...I know I could just agree to take the little pill and be done with it! But there are others out there on very trustworthy sites who have the same stats as mine and are walking the road I thought I would, mostly because of HER2...my unknown factor.
When I get a firm grip on specifically why Dr. B feels that protocol is not right for me, even with material that says it is, then I will be more willing to consider starting the hormone therapy. But I need more than just the NCCN document and their findings (which I have read)to convince me that in my case, it is the best way to go.
Please try to understand however you can my need to take a little more time. I guarantee you, it will not be a lot. ILC is less common that IDC and the information is not as plentiful. Rarely is HER2 positive in this form of bc and especially on a mass 0.6cm. Mine showed up proudly in the stats in both pathology reports.
Before I take what might be considered the easiest way out of my dilemma regarding my treatment options, I want all the information out on the table and thoroughly discussed. I need to have the best reassurance that with all we know and with whatever data is out there, it most likely IS my best option.
With my nose in more material than anyone would ever want to peruse, the conclusion is that I have time. Most doctors say 12 weeks is the MAX to wait until the start of chemo and I have NO INTENTION of waiting that long.
Next week, the 13th, I will go see the oncologist and have a heart to heart talk with all my documents, questions, and concerns. I will be requesting an oncotype Dx test, which determines just how aggressive my cells are. This will also help both of us decide whether I am a candidate for and would benefit from chemo and Herceptin vs just Tamoxifen, which I would likely be on later anyway. I want to do all that I can to avoid going down this road again!
When I talked with Mayo Clinic, they were also interested in having a bone scan done, since my M (metatastic rating) was "X" which means "no data to determine". It would let me know if any of those little cells might have snuck off somewhere else without my knowledge. It is just under consideration and may not be necessary at all after they see my records and reports.
I know I have a small mass...I know I am lucky beyond words...I know I could just agree to take the little pill and be done with it! But there are others out there on very trustworthy sites who have the same stats as mine and are walking the road I thought I would, mostly because of HER2...my unknown factor.
When I get a firm grip on specifically why Dr. B feels that protocol is not right for me, even with material that says it is, then I will be more willing to consider starting the hormone therapy. But I need more than just the NCCN document and their findings (which I have read)to convince me that in my case, it is the best way to go.
Please try to understand however you can my need to take a little more time. I guarantee you, it will not be a lot. ILC is less common that IDC and the information is not as plentiful. Rarely is HER2 positive in this form of bc and especially on a mass 0.6cm. Mine showed up proudly in the stats in both pathology reports.
Before I take what might be considered the easiest way out of my dilemma regarding my treatment options, I want all the information out on the table and thoroughly discussed. I need to have the best reassurance that with all we know and with whatever data is out there, it most likely IS my best option.
Been where, done that, moving forward or not? 7/6/2010
On May 4, I had a biopsy with a diagnosis of Invasive Ductal Carcinoma and was triple positive, ER 100%, PR 70%, and HER2 +3. My surgeon and I had discussed Herceptin, chemo and what likely lay ahead.
On June 4 I had a lumpectomy. 3 nodes removed, all clear which was great. Two weeks later, my surgeon spoke with me about a port, what that would entail, and checked that I had made my oncologist appointment. Healing was going well, I was ready...
On June 29, I met with my new oncologist. The new diagnosis from the surgical pathology report: Invasive Lobular Carcinoma with some Lobular Carcinoma in Situ; tumor was now 0.6cm; Grade 2 (6/9 Nottingham scale); T1b, N0, MX; ER/PR positive; HER2 positive. Tamoxifen for 5 years, standard radiation.
I started again searching the American Cancer Society, National Cancer Insitiute. I went to the support groups, discussion boards on BreastCancer.org and HER2Support.org. I searched for staff members I had referred to me by friends only to discover they not only worked out of the larger hospitals in Grand Rapids but that just about everyone there works here too and they confer with one another.
With the type of breast cancer I have AND the fact that it is more unique being HER2 positive, I felt I was going to have to go to some place larger for the best chance of having patients like me who also had smaller masses under 1 cm. I considered the University of Michigan, but the site seemed to indicate that a physician referral would be the best way to go and I didn't want to wait until next week to discuss that. I looked at other Cancer Treatment Centers and then one particular place came to mind. It was worth a shot, especially since some of the research I was using in my thought process was done there.
This morning I took a deep breath and called The Mayo Clinic in Rochester, Minnesota. My late husbands partner had gone there many times for treatment of his MS and spoke so highly of the facility. What have I got to lose by inquiring? I was running out of options and time.
I spoke with one of the nurses for quite awhile. She took all my information, gave me a patient number, and I shared my concerns which she took note of. She then transfered me to the oncology department where my case will be discussed to determine whether or not they can be of help to me in creating/suggesting a treatment plan. Usually they like to have your surgery done there...I'm a little ahead of the game. She said someone would be contacting me regarding my options in the next two days and they likely would want to do a couple additional tests. Not surprised there.
If it happens, it may be a long drive, but one I have done before on my own from Minneapolis to the Ludington ferry. I'll take a plane if that is needed and rent a car. But most of all I am hopeful to be reviewed with fresh eyes, open minds and an extensive number of patients and their conditions. I am almost six weeks out now from surgery and am aware of the time going quickly every day. But I am more concerned about not starting with the correct program as my first step to the best outcome I can get.
If Mayo, with all their medical expertise, says my oncologist is correct and not being too conservative in his treatment option, then at least I can come back secure in taking Tamoxifen for the next 5 years. I will have the peace of mind in knowing I went the extra mile to find the best solution for me and that is it.
The sad part of all this my fellow cancer surviors know all too well:
Getting diagnosed is difficult enough. But having to decide what treatment is best when your life may depend on it? Only those who have fumbled through all the paperwork and tests, diagnoses and treatment options, pain and uncertainty, truly understand the toll it takes on you mentally, physically, socially, and emotionally. In my case, even with supportive and caring friends, there is no one vested as much in my decision as me. That one thought reinforces the fact that I have to depend on my research abilities, my body and my mind, be my own advocate at times, and truly believe in myself enough feel confident I have made the right choice for me.
It's no wonder I can't sleep at night sometimes!
On June 4 I had a lumpectomy. 3 nodes removed, all clear which was great. Two weeks later, my surgeon spoke with me about a port, what that would entail, and checked that I had made my oncologist appointment. Healing was going well, I was ready...
On June 29, I met with my new oncologist. The new diagnosis from the surgical pathology report: Invasive Lobular Carcinoma with some Lobular Carcinoma in Situ; tumor was now 0.6cm; Grade 2 (6/9 Nottingham scale); T1b, N0, MX; ER/PR positive; HER2 positive. Tamoxifen for 5 years, standard radiation.
I started again searching the American Cancer Society, National Cancer Insitiute. I went to the support groups, discussion boards on BreastCancer.org and HER2Support.org. I searched for staff members I had referred to me by friends only to discover they not only worked out of the larger hospitals in Grand Rapids but that just about everyone there works here too and they confer with one another.
With the type of breast cancer I have AND the fact that it is more unique being HER2 positive, I felt I was going to have to go to some place larger for the best chance of having patients like me who also had smaller masses under 1 cm. I considered the University of Michigan, but the site seemed to indicate that a physician referral would be the best way to go and I didn't want to wait until next week to discuss that. I looked at other Cancer Treatment Centers and then one particular place came to mind. It was worth a shot, especially since some of the research I was using in my thought process was done there.
This morning I took a deep breath and called The Mayo Clinic in Rochester, Minnesota. My late husbands partner had gone there many times for treatment of his MS and spoke so highly of the facility. What have I got to lose by inquiring? I was running out of options and time.
I spoke with one of the nurses for quite awhile. She took all my information, gave me a patient number, and I shared my concerns which she took note of. She then transfered me to the oncology department where my case will be discussed to determine whether or not they can be of help to me in creating/suggesting a treatment plan. Usually they like to have your surgery done there...I'm a little ahead of the game. She said someone would be contacting me regarding my options in the next two days and they likely would want to do a couple additional tests. Not surprised there.
If it happens, it may be a long drive, but one I have done before on my own from Minneapolis to the Ludington ferry. I'll take a plane if that is needed and rent a car. But most of all I am hopeful to be reviewed with fresh eyes, open minds and an extensive number of patients and their conditions. I am almost six weeks out now from surgery and am aware of the time going quickly every day. But I am more concerned about not starting with the correct program as my first step to the best outcome I can get.
If Mayo, with all their medical expertise, says my oncologist is correct and not being too conservative in his treatment option, then at least I can come back secure in taking Tamoxifen for the next 5 years. I will have the peace of mind in knowing I went the extra mile to find the best solution for me and that is it.
The sad part of all this my fellow cancer surviors know all too well:
Getting diagnosed is difficult enough. But having to decide what treatment is best when your life may depend on it? Only those who have fumbled through all the paperwork and tests, diagnoses and treatment options, pain and uncertainty, truly understand the toll it takes on you mentally, physically, socially, and emotionally. In my case, even with supportive and caring friends, there is no one vested as much in my decision as me. That one thought reinforces the fact that I have to depend on my research abilities, my body and my mind, be my own advocate at times, and truly believe in myself enough feel confident I have made the right choice for me.
It's no wonder I can't sleep at night sometimes!
Sunday, July 4, 2010
Good friends and the 4th of July diversion tactic 7/04/2010
First there was a movie on Friday evening and I immersed myself into my second viewing of Eclipse so Diane and Sandy could see it.
On Saturday morning, I worked from 11 to 2:30 at Hokey Pokey, saw quite a bit of the wonderful 4th of July parade that goes through downtown Whitehall to Montague across the causeway. In the evening I was headed to a friends house for dinner, cards and likely a few beverages that would keep me there instead of returning home in the evening.
The next morning I got up early to get home and let Foxy out of the house after the long night. It gave her an opportunity to run and chase her first BIG bunny rabbit! I hadn't seen one in the yard myself so it was a pleasant and fun surprise for us both.
I was invited back down for breakfast and a day at the beach with the three of them and I was glad I did. The weather was hot, the beach was white and clean, and the water was cool with waves to jump and a bright blue sky filled with sunlight. We talked, relaxed quietly, just enjoyed people watching and resting. I pulled out my notebook to write a few times and then would put it away to turn over and enjoy the warmth of the sun on another side coated with sunscreen.
I remembered that with chemo and/or radiation, sun exposure was limited. Whether I ended up having it or not, I didn't want to miss this great chance to enjoy the day and the warm sunshine.
Yesterday I had discovered an "Ask the Expert" section that was referred to on one of my cancer support sites. It is part of John Hopkins and you can ask for an opinion from a highly qualified nurse and two time cancer survivor. I briefly shared my story. She encouraged me to seek a second opinion, if not at John Hopkins, then she suggested the UofM since I had told her I was in Michigan. She also suggested I request a specific test that I had not had that might clarify whether or not my cells were aggressive enough to need chemo so there's another option.
The only cancer talk was about this when I asked to briefly share what I had found out. The rest of the time, I just tried to forget and think of other things and enjoy every minute I had on the beach...all five hours of it and LOTS of Vitamin D that I have been lacking.
What a great way to begin and progress through to the late afternoon on the 4th of July!
On Saturday morning, I worked from 11 to 2:30 at Hokey Pokey, saw quite a bit of the wonderful 4th of July parade that goes through downtown Whitehall to Montague across the causeway. In the evening I was headed to a friends house for dinner, cards and likely a few beverages that would keep me there instead of returning home in the evening.
The next morning I got up early to get home and let Foxy out of the house after the long night. It gave her an opportunity to run and chase her first BIG bunny rabbit! I hadn't seen one in the yard myself so it was a pleasant and fun surprise for us both.
I was invited back down for breakfast and a day at the beach with the three of them and I was glad I did. The weather was hot, the beach was white and clean, and the water was cool with waves to jump and a bright blue sky filled with sunlight. We talked, relaxed quietly, just enjoyed people watching and resting. I pulled out my notebook to write a few times and then would put it away to turn over and enjoy the warmth of the sun on another side coated with sunscreen.
I remembered that with chemo and/or radiation, sun exposure was limited. Whether I ended up having it or not, I didn't want to miss this great chance to enjoy the day and the warm sunshine.
Yesterday I had discovered an "Ask the Expert" section that was referred to on one of my cancer support sites. It is part of John Hopkins and you can ask for an opinion from a highly qualified nurse and two time cancer survivor. I briefly shared my story. She encouraged me to seek a second opinion, if not at John Hopkins, then she suggested the UofM since I had told her I was in Michigan. She also suggested I request a specific test that I had not had that might clarify whether or not my cells were aggressive enough to need chemo so there's another option.
The only cancer talk was about this when I asked to briefly share what I had found out. The rest of the time, I just tried to forget and think of other things and enjoy every minute I had on the beach...all five hours of it and LOTS of Vitamin D that I have been lacking.
What a great way to begin and progress through to the late afternoon on the 4th of July!
Friday, July 2, 2010
What it all boils down to...what to do with me? 7/2/2010
Wednesday morning I was a mess! I decided I needed to call Dr. P and get her thoughts on this. Maybe she could help me understand how the diagnosis could change, and why I didn't need to be concerned about being HER2 positive anymore? I contacted the clinic and left a message telling her I may be considering the other oncologist we talked about and would like to speak with her.
This morning, Friday, Dr. P called and we talked at 7:30 tonight for about 10 minutes. She clarified some points, especially the In Situ which really isn't, it's just another portion of the mass. She said Dr. B thought I was fine with everything when I left and I suppose I did lead him to believe that. Just my delayed thinking and response. She asked me to write down questions, bring data, whatever and go back to see him when I am scheduled to. If I still feel uncomfortable, then she'll help set me up with someone else and is willing to work with them if that is the case, but to give him a chance. She also apologized for her lack of knowledge with masses as small as mine that are HER2 positive. Herceptin and chemo is questionable, she learned and planned to be more cautious in her own diagnoses.
I do have Invasive Lobular Carcinoma which actually does fit. Usually has trouble showing up clearly on a mammogram...ya think??? Since I had three of them there's quite a bit of documentation available to support that idea. Only 10-15% of women have this form of breast cancer...wouldn't ya know I'd get to be so special!! I have a 0.6mm tumor now with some area of Lobular Carcinoma in Situ surrounding the area and I am still HER2 positive +3. Therein lies my problem in my mind. Usually ILC patients are NOT Her2 positive, especially with such a small "tumor" but it's been confirmed within my mass twice.
I am a "data point" basically. They aren't sure what to do with me because they have never dealt with someone with a diagnosis and situation like mine. ILC, tumor smaller than 1 cm that is HER2 positive...oh my! Hence, I am in the gray area. More research for me I guess and seeking out places who have dealt with people with my diagnosis and what their treatment options were, all before July 13th!
I had absolutely NO idea so much of this would fall on me. It truly is a maze of diagnoses, conditions, options, and treatments and makes me wonder...if I do make a decision and choose a plan, how will I know that it's the right one?
This morning, Friday, Dr. P called and we talked at 7:30 tonight for about 10 minutes. She clarified some points, especially the In Situ which really isn't, it's just another portion of the mass. She said Dr. B thought I was fine with everything when I left and I suppose I did lead him to believe that. Just my delayed thinking and response. She asked me to write down questions, bring data, whatever and go back to see him when I am scheduled to. If I still feel uncomfortable, then she'll help set me up with someone else and is willing to work with them if that is the case, but to give him a chance. She also apologized for her lack of knowledge with masses as small as mine that are HER2 positive. Herceptin and chemo is questionable, she learned and planned to be more cautious in her own diagnoses.
I do have Invasive Lobular Carcinoma which actually does fit. Usually has trouble showing up clearly on a mammogram...ya think??? Since I had three of them there's quite a bit of documentation available to support that idea. Only 10-15% of women have this form of breast cancer...wouldn't ya know I'd get to be so special!! I have a 0.6mm tumor now with some area of Lobular Carcinoma in Situ surrounding the area and I am still HER2 positive +3. Therein lies my problem in my mind. Usually ILC patients are NOT Her2 positive, especially with such a small "tumor" but it's been confirmed within my mass twice.
I am a "data point" basically. They aren't sure what to do with me because they have never dealt with someone with a diagnosis and situation like mine. ILC, tumor smaller than 1 cm that is HER2 positive...oh my! Hence, I am in the gray area. More research for me I guess and seeking out places who have dealt with people with my diagnosis and what their treatment options were, all before July 13th!
I had absolutely NO idea so much of this would fall on me. It truly is a maze of diagnoses, conditions, options, and treatments and makes me wonder...if I do make a decision and choose a plan, how will I know that it's the right one?
Thursday, July 1, 2010
Nothing better than kids and family 7/01/2010
This evening I spent a bit of time reflecting on my day as soft tears descended from my eyes. They were happy tears but at the same time sprinkled with a little bit of regret because of a life wish I couldn't enjoy.
I spent the warm afternoon with Jessica, her two boys and six year old daughter. They also invited my dog Foxy to come along to romp with Gretel and Hannah. Though the dogs biggest concern seemed to be where we were and protecting us from the unknowns in the yard, they did take off now and then to romp, chase, growl, bark, whine and demonstrate some playfulness when they didn't think we were watching.
Bryan showed me the two daily newspapers he and his brother Jonathan had written. What a joy those were to read! I even made the paper as a coming arrival. Their stories were entertaining and covered sports, comics, current events, an editorial page and, of course, advertising of the most creative form. They also disappeared for a bit of time to create todays edition so it would be ready when Paul arrived home. Can't have Dad come home without the daily paper!
The boys performed their own rock concert complete with air guitars and drums, smooth ballet time moves and ending with a chest bump. Strictly original! They splashed around in the water as Jessica and I enjoy some time talking about anything and everthing.
The family invited me to stay and have dinner. The tortilla soup was yummy and everyone pitched in to get the table set and the food ready. We chatted, ate, helped one another clear the table and the kids went out with Dad to play. They worked on soccer and baseball skills and Paul helped Julia with her bike riding. Jessica and I observed all from the porch.
When it was around 8, the kids showered and got ready for bed, crawling up beside us in the swing or one adjacent chairs and we all, Dad included, listened to the next Harry Potter chapter warmly read with expression by Mom. What a lovely way to end the evening and a delightful day with such warm and loving friends. Jessica was right, it does feel like family, for all of us and I am honored to be part of their and blessed to have them as part of mine.
Those memories made in that one afternoon and evening, will warm my heart for a lifetime.
I spent the warm afternoon with Jessica, her two boys and six year old daughter. They also invited my dog Foxy to come along to romp with Gretel and Hannah. Though the dogs biggest concern seemed to be where we were and protecting us from the unknowns in the yard, they did take off now and then to romp, chase, growl, bark, whine and demonstrate some playfulness when they didn't think we were watching.
Bryan showed me the two daily newspapers he and his brother Jonathan had written. What a joy those were to read! I even made the paper as a coming arrival. Their stories were entertaining and covered sports, comics, current events, an editorial page and, of course, advertising of the most creative form. They also disappeared for a bit of time to create todays edition so it would be ready when Paul arrived home. Can't have Dad come home without the daily paper!
The boys performed their own rock concert complete with air guitars and drums, smooth ballet time moves and ending with a chest bump. Strictly original! They splashed around in the water as Jessica and I enjoy some time talking about anything and everthing.
The family invited me to stay and have dinner. The tortilla soup was yummy and everyone pitched in to get the table set and the food ready. We chatted, ate, helped one another clear the table and the kids went out with Dad to play. They worked on soccer and baseball skills and Paul helped Julia with her bike riding. Jessica and I observed all from the porch.
When it was around 8, the kids showered and got ready for bed, crawling up beside us in the swing or one adjacent chairs and we all, Dad included, listened to the next Harry Potter chapter warmly read with expression by Mom. What a lovely way to end the evening and a delightful day with such warm and loving friends. Jessica was right, it does feel like family, for all of us and I am honored to be part of their and blessed to have them as part of mine.
Those memories made in that one afternoon and evening, will warm my heart for a lifetime.
Nothing like spewing frustration 6/29/2010 & 7/1/2010
I was still reeling from the diagnosis change and the new treatment program presented today. Basically I am confused, uncertain, and totally feeling overwhelmed. Granted, my surgeon had given me other information based on my original pathology report from the biopsy. So, I based all my research on that. I didn't realize just how wound up I was until I went into rehearsal this evening.
I knew they would all want to know and before I could even get through the door, I was spewing out my frustration and confusion to Ruth. Then Carol walked in and the frustration continued as Gerry joined us. Each of them shared knowledge from experiences and we all tried to make sense of what I had heard. Bless them for letting me vent because I truly had no idea just how badly I needed to. I have been trying so hard not to burn out any friends or friendships over this that I just bottle it deeper and deeper inside. NOT a good thing!
This whole experience has been a roller coaster ride of emotions. First you are up because you feel like you are in control of your life again only to come down when you are given another alternative, hear you have to take another test, need to find another facility, whatever! It isn't enough to deal with the fact that something you never invited has been inside your body causing havoc without permission. Now the experts in who's hands you are putting your life aren't quite certain what to do with you. To make things as simple as possible, the easiest route is opted for according to the NCCN guidelines. Does that make it right for me?
We finally sang through some songs we'll be performing for a church service at Ferry Memorial on Sunday, July 11 and it certainly took some of the pressure off. Just getting to sing awhile with good friends felt wonderful. But I think it was made even better because my friends cared enough to know I needed them to listen, I needed them to share, and I truly wanted to hear what they had to say too. It was that reassurance that I was not alone in my thoughts that helped. I spend too much time there already!
I thought I was over spewing until I went to Beads today. I enjoyed being with everyone and making jewelry to give to breast cancer patients at the cancer center where I will soon be getting my treatments, if I end up with them. One of the women came in just before we were getting ready to leave. She had been through cancer treatments a few years ago and had offered her help and support. Before I knew it, I was telling her about my frustrations. Pretty soon, the other seven women were listening too. Under normal circumstances, I would have stopped since it was a private conversation, but I did not.
In my mind I think I believed they needed to hear this. Breast cancer is not one single disease. It has several different variations and with each comes complicated decisions on what treatment options you may get to choose from, what the side effects may be, what you may have to deal with and for how long, what the financial responsibilities are, and what the toll is on your life right now! At the center, they have a very efficient and helpful process you follow when you come for your first visit. But in my state of mind, with my diagnosis different, unprepared for my new treatment option, unfamiliar with the person suggesting my 5 year care plan, I walked out in a blur.
When I called to apologize to my friend Deb for talking so openly in front of the group about it she said, "You know Donalee, it didn't bother me at all. I think that was a good thing to talk about it openly as you did. We don't talk about the pressures of dealing with cancer. It's not cut and dried. You have demands put on you that most people don't even realize when you just struggle getting through a day sometimes. There isn't one single part of this whole thing that is easy. It could happen to them and women need to know who truly is responsible for their care...and it isn't the doctors."
And I take that thought to bed with me every single night!
I knew they would all want to know and before I could even get through the door, I was spewing out my frustration and confusion to Ruth. Then Carol walked in and the frustration continued as Gerry joined us. Each of them shared knowledge from experiences and we all tried to make sense of what I had heard. Bless them for letting me vent because I truly had no idea just how badly I needed to. I have been trying so hard not to burn out any friends or friendships over this that I just bottle it deeper and deeper inside. NOT a good thing!
This whole experience has been a roller coaster ride of emotions. First you are up because you feel like you are in control of your life again only to come down when you are given another alternative, hear you have to take another test, need to find another facility, whatever! It isn't enough to deal with the fact that something you never invited has been inside your body causing havoc without permission. Now the experts in who's hands you are putting your life aren't quite certain what to do with you. To make things as simple as possible, the easiest route is opted for according to the NCCN guidelines. Does that make it right for me?
We finally sang through some songs we'll be performing for a church service at Ferry Memorial on Sunday, July 11 and it certainly took some of the pressure off. Just getting to sing awhile with good friends felt wonderful. But I think it was made even better because my friends cared enough to know I needed them to listen, I needed them to share, and I truly wanted to hear what they had to say too. It was that reassurance that I was not alone in my thoughts that helped. I spend too much time there already!
I thought I was over spewing until I went to Beads today. I enjoyed being with everyone and making jewelry to give to breast cancer patients at the cancer center where I will soon be getting my treatments, if I end up with them. One of the women came in just before we were getting ready to leave. She had been through cancer treatments a few years ago and had offered her help and support. Before I knew it, I was telling her about my frustrations. Pretty soon, the other seven women were listening too. Under normal circumstances, I would have stopped since it was a private conversation, but I did not.
In my mind I think I believed they needed to hear this. Breast cancer is not one single disease. It has several different variations and with each comes complicated decisions on what treatment options you may get to choose from, what the side effects may be, what you may have to deal with and for how long, what the financial responsibilities are, and what the toll is on your life right now! At the center, they have a very efficient and helpful process you follow when you come for your first visit. But in my state of mind, with my diagnosis different, unprepared for my new treatment option, unfamiliar with the person suggesting my 5 year care plan, I walked out in a blur.
When I called to apologize to my friend Deb for talking so openly in front of the group about it she said, "You know Donalee, it didn't bother me at all. I think that was a good thing to talk about it openly as you did. We don't talk about the pressures of dealing with cancer. It's not cut and dried. You have demands put on you that most people don't even realize when you just struggle getting through a day sometimes. There isn't one single part of this whole thing that is easy. It could happen to them and women need to know who truly is responsible for their care...and it isn't the doctors."
And I take that thought to bed with me every single night!
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