Dan & I decided it would be a good move to get one more opinion on chemotherapy. It's not about losing my hair, or being down for a few months. I just think that chemo is a lot to put my body through if the benefit is going to be marginal. Also, we both had questions when we left the first doctor's office and when we talked about it together, we still had different answers. We thought that perhaps we were not with the right doctor. They are very willing to have us meet with more than one doctor to make our decisions so I went with the Dr. Walker who's been treating my friend H.
Dr. Walker did a thorough job explaining chemo and why it is appropriate for me. He recommended the same drugs as the other doc, but thought that 4 rounds would be appropriate, and that there is not enough evidence to support doing the 2 additional rounds previously recommended. That sits well with me, as I understand that the side effects worsen with each round and 6 might get icky. The 2 additional would also keep me on chemo into the beginning of next school year and I'd rather be on the mend by the time I have to get my kids organized and on their way.
There is one more test that will help to decide whether the type of cancer cells that made up my tumor are likely to stay put or to travel. If they are likely to stay put, this minimizes any benefit from chemo. It is called Oncotype DX. I asked the new Dr. about this one, and he told me that the standard of care in my situation was to do chemo but if I'm having a hard time making that decision, this one might help me to be sure one way or the other. Oncotype DX is a genomic test which results in scoring the tumor with a likeihood of recurrence. It's one more way to decide if the risks of chemo outweigh the benefits in reducing the chance of the cancer returning. We are going to do the test and should have the results by Friday or Monday. I will go ahead with chemo if the test shows anything other than a very low (<18) score. If it's higher, it will just be a confirmation.
In the meantime, Dan & I are going ahead with our Chemo Education and Financial Planning Consultations this afternoon. We'll have all our ducks in a row to move ahead with either chemo or just jump ahead to radiation once we know the results of the Oncotype test.
May 27, 2009
May 26, 2009
Breast Cancer Stayed Home
We packed our suitcases and headed south to the Great Wolf Lodge this weekend. As we were pulling out of the driveway I rolled down the window and shouted "Good bye breast cancer - you're staying home this weekend". For the most part I forgot about the breast cancer fight and just had some fun and relaxation with my family. We've had a trip to the Great Wolf Lodge on our minds for quite a while and had originally planned our trip in June, the first weekend that school gets out. Since I will probably be starting chemo before then, I wanted to go now, in order to feel my best and enjoy the time. It was a beautiful weekend, although not quite warm enough for outdoor water slides, so the indoor option was perfect. The kids enjoyed the water park as well as the Quest at the lodge. I enjoyed reading Marie Osmond's "Might as Well Laugh about it Now" and watched lots and lots of people.
After the lodge, we drove 30 minutes North to visit with Mom and Tony for a night. For many years we have had a great time visiting them in Lacey. Mom cooks us great meals and Tony is always up for an interesting conversation or good-natured debate. They are both full of growing up stories and Tony can remember the names of people from 60 years ago like it was yesterday. I can barely remember the names of my children's classmates today. Now that they have a home on our property they spend more time up here, so this was truly a rare treat! However, for some reason, I become so relaxed that I just fall asleep about any old time at Mom's. Funny, we used to do that at Dan's Granny's house in Idaho as well. I think we just forget all our worries, which is just the way it's meant to be.
After the lodge, we drove 30 minutes North to visit with Mom and Tony for a night. For many years we have had a great time visiting them in Lacey. Mom cooks us great meals and Tony is always up for an interesting conversation or good-natured debate. They are both full of growing up stories and Tony can remember the names of people from 60 years ago like it was yesterday. I can barely remember the names of my children's classmates today. Now that they have a home on our property they spend more time up here, so this was truly a rare treat! However, for some reason, I become so relaxed that I just fall asleep about any old time at Mom's. Funny, we used to do that at Dan's Granny's house in Idaho as well. I think we just forget all our worries, which is just the way it's meant to be.
May 19, 2009
I Wogged Today!
Have you ever heard of Wogging? It's when you alternate between run intervals and walk intervals. I did that today. For the first time since my first surgery on April 7th, I ran. I wore 2 sports bras for support and warmed up for about 15 minutes of brisk walking, then started with a 3 minute jog interval. I did 4 of those, with 2 minutes walking in between. I call it a 3-2. Maybe that's what every one calls it? Anyway, my body felt strong but my cardio stamina is sadly lacking. I guess that's what 2 surgeries and 6 weeks of no running (hey - don't forget my old friend - walking) will do. So I've decided to run the Susan G. Kommen Race for the Cure on June 7th. I've recruited my running partner - K2, who was ready and willing to join me. It's a 5K (3.1 miles) so I should be able to build up to a decent ratio of run:walk by then.
It will be a wonderful way to prepare myself for chemo, which I am hoping to schedule to begin on June 9th. Doesn't that sound funny? When you're "hoping to schedule" something it should be, oh I don't know...a pedicure, a haircut, a coffee date, someone to clean the carpets... Not 4 hours of iv drugs and several days of side effects to follow. Losing hair, nausea, etc.
Next week, I have 3 appointments. I am meeting with a different Medical Oncologist just to get a second opinion and to see if there might be a better relationship fit. I am going to be spending the next 5 years in the care of my Medical Onco and need to be 100% comfortable with his/her style. The first doctor was sharp, but I left with several unanswered questions and would just like to meet with one more doctor. Don't get me wrong, I am committed to chemo as it gives me the best chance for a cancer-free life, but want to make double sure.
I will also meet with a counselor at the Breast Center to interview for Genetic Testing. I will blog more about that after I have been to the meeting to learn what it is all about. I don't think that I have the gene, but it is good to make sure, given my age at diagnosis.
Dan & I will meet together for a chemotherapy education session - I'm sure I'll learn more about the side effects of the regimen I am taking, as well as the procedures for chemo. I have been reading memoirs and blogs and have a few friends who have taken the same meds that I will be taking so I think that I have a pretty good idea of what the side effects can be. I will be getting a prescription for a wig, but honestly I see myself more in hats and scarves - especially over the summer.
We will also meet with a financial counselor. Although we have medical insurance through Dan's work, we will still be paying a portion of the expenses. I guess we're going to find out how much that will be. I am not sure that I really want to know. It's bad enough that I have to go through all this...but then we have to be stuck with medical bills too? Are you kidding me?
We've decided to move our weekend at the Great Wolf Lodge to this coming weekend. We had scheduled it for the first weekend that school gets out in June, but given that I am not sure how I'll feel after my first round of chemo we would like to go now while I can still enjoy the time away with family. The kids have been dying to go, so right about now seems like a good time.
It will be a wonderful way to prepare myself for chemo, which I am hoping to schedule to begin on June 9th. Doesn't that sound funny? When you're "hoping to schedule" something it should be, oh I don't know...a pedicure, a haircut, a coffee date, someone to clean the carpets... Not 4 hours of iv drugs and several days of side effects to follow. Losing hair, nausea, etc.
Next week, I have 3 appointments. I am meeting with a different Medical Oncologist just to get a second opinion and to see if there might be a better relationship fit. I am going to be spending the next 5 years in the care of my Medical Onco and need to be 100% comfortable with his/her style. The first doctor was sharp, but I left with several unanswered questions and would just like to meet with one more doctor. Don't get me wrong, I am committed to chemo as it gives me the best chance for a cancer-free life, but want to make double sure.
I will also meet with a counselor at the Breast Center to interview for Genetic Testing. I will blog more about that after I have been to the meeting to learn what it is all about. I don't think that I have the gene, but it is good to make sure, given my age at diagnosis.
Dan & I will meet together for a chemotherapy education session - I'm sure I'll learn more about the side effects of the regimen I am taking, as well as the procedures for chemo. I have been reading memoirs and blogs and have a few friends who have taken the same meds that I will be taking so I think that I have a pretty good idea of what the side effects can be. I will be getting a prescription for a wig, but honestly I see myself more in hats and scarves - especially over the summer.
We will also meet with a financial counselor. Although we have medical insurance through Dan's work, we will still be paying a portion of the expenses. I guess we're going to find out how much that will be. I am not sure that I really want to know. It's bad enough that I have to go through all this...but then we have to be stuck with medical bills too? Are you kidding me?
We've decided to move our weekend at the Great Wolf Lodge to this coming weekend. We had scheduled it for the first weekend that school gets out in June, but given that I am not sure how I'll feel after my first round of chemo we would like to go now while I can still enjoy the time away with family. The kids have been dying to go, so right about now seems like a good time.
May 15, 2009
Can My Day be a Different Day?
We met with the Doctors today. The first appointment was with Dr. Cole in Radiation Oncology. From the beginning we have known that part of "keeping your breast" as she put it was going to be radiation treatment. While radiation is not good for the body, it has pretty easy side effects and most people my age tolerate it with minimal fatigue and some irritation to the skin ranging from slight sunburn to peeling to blistering. That clears up as soon as radiation is over. There can be some longer term effects inlcuding a change to the size of the breast (swelling or shrinking) and to the color of the skin. Most women are reportedly pleased with the outcome of radiation, given the alternative of a full mastectomy.
I also learned that the correct name for my surgery is "Partial Mastectomy" and "Lumpectomy" is a nick name. Cute, huh? Some women even go so far as to call it a "Lumpy". Hee Hee.
In between the appointments, we had about an hour and a half to hang out so we went in search of a cafe or coffee shop. We ended up on Colby with a Tullys on one side and a homey little cafe on the other. Dan wanted the homey cafe but I wanted a Tullys latte (Venaccio is my fave if anyone is asking btw)...."It's your day" Dan told me, so Tully's it was.
"Umm....can my day be a different day?" I think that's only fair.
The appointment with Dr. Wang, the Medical Oncologist was harder than I thought it would be. She reviewed my history to date and didn't hesitate to tell us that her recommendation was for me to have chemotherapy to help make sure the cancer does not come back. They have removed the tumor and the 3 DCIS ducts, but it is possible that there are other cancerous cells which are not detected which could eventually grow into cancer.
I haven't cried much so far, and I won't say I all out cried, but I did have to fight the tears so that I could listen to what she had to say. I also cried when I first heard the news but once I got over it I went right into "go mode". I wasn't surprised by the cancer but there is a difference between anticipating it, and actually hearing the diagnosis. I felt much the same when hearing the recommendation for chemo. When Dr. Smith said it, chemo was more of an opinion or thought, to be open to it when the discussion comes up. When the "Chemotherapist" as I like to call her says it the suggestion becomes much more real. I asked Dr. Wang all kinds of questions trying to understand why chemo was so beneficial and how it would help me if it was so toxic. Really, I think I was just trying to find a way out of it.
Dr. Wang recommeded the regimen called "Second Generation Regimen" which includes Cytoxan and Taxotere every 3 weeks for 6 cycles, so 18 weeks. This would start the beginning of June, giving my incision time to heal before sending in the very drugs that would prevent the rapidly growing cells from healing the tissue. Side effects include nausea, fatigue some general body aches and probable hair loss.
I have already started to deal with preparing myself for these things, including the hair loss although I'm sure I'll be talking more about that later. While hair loss was the first thing that freaked me out about chemo, it's not really very significant any more. More significant is just that it is going to take so long to get back to 100%. It's hard not knowing how I'm going to feel and whether I can commit to the things that I usually do.
I love all of the comments about my positive attitude but honestly, looking at the bright side of things just works better for me. Being sad or angry or depressed, not so much. So here's a few thoughts:
1) During my pregnancy with Audrey I was nauseus for the full term. That's 40 weeks. This is only going to be 18 weeks, so I can do this.
2) I look good in hats.
3) If I do lose my hair, it will be in the summer - hair is hot, I will be much cooler in the summer.
4) I love scarves and they are so in right now. I will have a great selection to choose from.
5) If you have any bright side comments, I would love to hear them.
I also learned that the correct name for my surgery is "Partial Mastectomy" and "Lumpectomy" is a nick name. Cute, huh? Some women even go so far as to call it a "Lumpy". Hee Hee.
In between the appointments, we had about an hour and a half to hang out so we went in search of a cafe or coffee shop. We ended up on Colby with a Tullys on one side and a homey little cafe on the other. Dan wanted the homey cafe but I wanted a Tullys latte (Venaccio is my fave if anyone is asking btw)...."It's your day" Dan told me, so Tully's it was.
"Umm....can my day be a different day?" I think that's only fair.
The appointment with Dr. Wang, the Medical Oncologist was harder than I thought it would be. She reviewed my history to date and didn't hesitate to tell us that her recommendation was for me to have chemotherapy to help make sure the cancer does not come back. They have removed the tumor and the 3 DCIS ducts, but it is possible that there are other cancerous cells which are not detected which could eventually grow into cancer.
I haven't cried much so far, and I won't say I all out cried, but I did have to fight the tears so that I could listen to what she had to say. I also cried when I first heard the news but once I got over it I went right into "go mode". I wasn't surprised by the cancer but there is a difference between anticipating it, and actually hearing the diagnosis. I felt much the same when hearing the recommendation for chemo. When Dr. Smith said it, chemo was more of an opinion or thought, to be open to it when the discussion comes up. When the "Chemotherapist" as I like to call her says it the suggestion becomes much more real. I asked Dr. Wang all kinds of questions trying to understand why chemo was so beneficial and how it would help me if it was so toxic. Really, I think I was just trying to find a way out of it.
Dr. Wang recommeded the regimen called "Second Generation Regimen" which includes Cytoxan and Taxotere every 3 weeks for 6 cycles, so 18 weeks. This would start the beginning of June, giving my incision time to heal before sending in the very drugs that would prevent the rapidly growing cells from healing the tissue. Side effects include nausea, fatigue some general body aches and probable hair loss.
I have already started to deal with preparing myself for these things, including the hair loss although I'm sure I'll be talking more about that later. While hair loss was the first thing that freaked me out about chemo, it's not really very significant any more. More significant is just that it is going to take so long to get back to 100%. It's hard not knowing how I'm going to feel and whether I can commit to the things that I usually do.
I love all of the comments about my positive attitude but honestly, looking at the bright side of things just works better for me. Being sad or angry or depressed, not so much. So here's a few thoughts:
1) During my pregnancy with Audrey I was nauseus for the full term. That's 40 weeks. This is only going to be 18 weeks, so I can do this.
2) I look good in hats.
3) If I do lose my hair, it will be in the summer - hair is hot, I will be much cooler in the summer.
4) I love scarves and they are so in right now. I will have a great selection to choose from.
5) If you have any bright side comments, I would love to hear them.
May 13, 2009
On Conversations with Dr. Smith (Yes, that's his real name)
Here is part of an email I sent to my friend K2, she thought that all of the blog readers might like to see this as well.
I'm feeling good that the surgery part is complete and he has removed all of what was related to this cancer. According to the MRI and Mammo, they can not see any other cancer. The thing he did see, and why he did not get clear margins in the first place was some ducts called DCIS or Ductal Carcinoma In Situ - or ducts filled with cancer cells which were not spreading. Kind of like pre-cancer. There is no way to know if there are more, but probably not. He removed 3 of those. So while that is not really devastating news, it's not great either.
He did discuss chemo again and said I was kind of a borderline situation. The tumor is big enough to call it Stage II, but the cancer has not spread outside my breast and they removed what was there. Plus I'll be on tamoxifen (hormone treatment) for the next 5 years which will really slow/stop growth of any other breast cancer. But his recommendation was to do it, because I am so young. If I was 20 yrs older, he'd say no. The reason for this is that the cancer has more years to recur, and because it tends to be more aggressive in pre-menopausal women.
We really make the final decision with the oncologist - I should find out today when the appointment is scheduled. I am hoping to get in quickly.
I'm ready to get back to walking, and might even try a bit of easy free weights. Who knows what chemo will bring, but I might as well feel good while I can.
I'm feeling good that the surgery part is complete and he has removed all of what was related to this cancer. According to the MRI and Mammo, they can not see any other cancer. The thing he did see, and why he did not get clear margins in the first place was some ducts called DCIS or Ductal Carcinoma In Situ - or ducts filled with cancer cells which were not spreading. Kind of like pre-cancer. There is no way to know if there are more, but probably not. He removed 3 of those. So while that is not really devastating news, it's not great either.
He did discuss chemo again and said I was kind of a borderline situation. The tumor is big enough to call it Stage II, but the cancer has not spread outside my breast and they removed what was there. Plus I'll be on tamoxifen (hormone treatment) for the next 5 years which will really slow/stop growth of any other breast cancer. But his recommendation was to do it, because I am so young. If I was 20 yrs older, he'd say no. The reason for this is that the cancer has more years to recur, and because it tends to be more aggressive in pre-menopausal women.
We really make the final decision with the oncologist - I should find out today when the appointment is scheduled. I am hoping to get in quickly.
I'm ready to get back to walking, and might even try a bit of easy free weights. Who knows what chemo will bring, but I might as well feel good while I can.
May 12, 2009
Good-bye For Now, Dr. Smith
Today was my post-op appointment with Dr. Smith. After an excision on the lumpectomy, he is 98% sure that all of the cancer was removed. I'm pretty sure that it is as good as it gets, and 100% is just not in a surgeon's vocabulary. So that is great news. My next step is to meet with a Medical Oncologist to discuss chemotherapy and hormone therapy. Following that, will be a Radiation Oncologist to discuss radiation. Although I know that I still have a lot of stuff ahead of me, I am greatly relieved to have the CANCER OUT OF ME!!!!
As for tonight, we celebrated with a Papa Murphy's pizza and ice cream from my friend and fellow breast cancer survivor, Anna. (Anna is currently raising money for breast cancer research and training to walk the 3-day walk - I've put a link to her website in my Favorites section)
Thank you for your prayers, the surgery was a success.....
As for tonight, we celebrated with a Papa Murphy's pizza and ice cream from my friend and fellow breast cancer survivor, Anna. (Anna is currently raising money for breast cancer research and training to walk the 3-day walk - I've put a link to her website in my Favorites section)
Thank you for your prayers, the surgery was a success.....
May 7, 2009
Round #2 Down
Well, I'm home from surgery - recovering comfortably. I do not have any interesting dreams to report, as I'm not sure I ever got into a deep enough sleep the night before to have any dreams at all. As a result, I was very tired and grouchy on Tuesday. Adding to that the fact that I could not eat at all, and could not drink after 11:00am led me to the decision to get under a blanket and watch tv all morning. Do you know how many commercials during the day are dedicated to food and/or food products? ALL OF THEM! After about noon the hunger went away and all I had to cling to was anxiety. Fun.
The good thing was that I did not have to do any of the other pre-procedures. Just show up for the 1 hour surgery, get prepped, go to sleep, wake up and go home. I even got to choose which type of sedation to use this time. Either general anastesia (completely out, breathing tube, no chance of waking up or remembering anything) or deep sedation (awake but so deeply sedated that you think you are asleep and don't remember much if anything). I had a very hard time deciding because I am basically afraid to feel pain. It's funny because I think that I have a pretty high tolerance for pain, but it still scares me. I asked the prep nurse, Candice, for her opinion and she figured if she had the choice it would be deep sedation. Hmm...still, hard to decide. Eventually, I was there looking the anastesiologist in the face and still had not decided. In the end I choose deep sedation and it was great. I have a vague recollection of some sensation but no pain. When it came time to wake up, I woke up quickly, no nausea, sore throat or dizziness and was home an hour earlier than I anticipated.
I hate to say this, but I'm getting kinda used to surgery. I think that Dan is also getting used to taking me to surgery. He knows to be ready to go out the door the minute I say so, and not to even try to talk to me on the way there. Once we get there, I relax and can be quite chatty with the medical personnel. Go figure. I've been dealing with the Everett Clinic and they really go out of their way to make sure that patients are comfortable and happy. I appreciate it tremendously and try to treat them in kind. Plus, it's a good idea just to get out of the way and let them do their job. Let them focus on the procedure an not on appeasing a grouchy patient.
Our next appointment is May 12, with the surgeon to discuss any results from this last surgery. He removed another 1mm area around the tumor site and it will go to pathology to make sure it is all clear. If there is no cancer found in that tissue, then he will refer us to the medical oncologist with whom I will be spending the next several months. We will have discussions and make decisions on the best treatment for my case, to make sure that the cancer does not return in the same breast, the other breast or anywhere else in my body.
The good thing was that I did not have to do any of the other pre-procedures. Just show up for the 1 hour surgery, get prepped, go to sleep, wake up and go home. I even got to choose which type of sedation to use this time. Either general anastesia (completely out, breathing tube, no chance of waking up or remembering anything) or deep sedation (awake but so deeply sedated that you think you are asleep and don't remember much if anything). I had a very hard time deciding because I am basically afraid to feel pain. It's funny because I think that I have a pretty high tolerance for pain, but it still scares me. I asked the prep nurse, Candice, for her opinion and she figured if she had the choice it would be deep sedation. Hmm...still, hard to decide. Eventually, I was there looking the anastesiologist in the face and still had not decided. In the end I choose deep sedation and it was great. I have a vague recollection of some sensation but no pain. When it came time to wake up, I woke up quickly, no nausea, sore throat or dizziness and was home an hour earlier than I anticipated.
I hate to say this, but I'm getting kinda used to surgery. I think that Dan is also getting used to taking me to surgery. He knows to be ready to go out the door the minute I say so, and not to even try to talk to me on the way there. Once we get there, I relax and can be quite chatty with the medical personnel. Go figure. I've been dealing with the Everett Clinic and they really go out of their way to make sure that patients are comfortable and happy. I appreciate it tremendously and try to treat them in kind. Plus, it's a good idea just to get out of the way and let them do their job. Let them focus on the procedure an not on appeasing a grouchy patient.
Our next appointment is May 12, with the surgeon to discuss any results from this last surgery. He removed another 1mm area around the tumor site and it will go to pathology to make sure it is all clear. If there is no cancer found in that tissue, then he will refer us to the medical oncologist with whom I will be spending the next several months. We will have discussions and make decisions on the best treatment for my case, to make sure that the cancer does not return in the same breast, the other breast or anywhere else in my body.
May 3, 2009
I Have a Confession to Make
I have a confession to make. Sometimes, when I read newsletters or email updates, I skim over the bible verses and search for the newsy bits. What's going on this week? Who had a baby? Who's getting married? My entry today is a Psalm and I hope that you will read it through, even if you are not usually one to read the bible. It represents my heart, and why I look at this a a season of blessing rather than a season of trial.
Lord, you have assigned me my portion and my cup;
you have made my lot secure.
The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.
I will praise the Lord, who counsels me;
even at night my heart instructs me.
I have set the Lord always before me.
Because He is at my right hand,
I will not be shaken.
Therefore my heart is glad and my toungue rejoices;
my body also will rest secure,
because you will not abandon me to the grave,
nor will you let your Holy One see decay.
You have made known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand.
Psalm 16: 5-11
Lord, you have assigned me my portion and my cup;
you have made my lot secure.
The boundary lines have fallen for me in pleasant places;
surely I have a delightful inheritance.
I will praise the Lord, who counsels me;
even at night my heart instructs me.
I have set the Lord always before me.
Because He is at my right hand,
I will not be shaken.
Therefore my heart is glad and my toungue rejoices;
my body also will rest secure,
because you will not abandon me to the grave,
nor will you let your Holy One see decay.
You have made known to me the path of life;
you will fill me with joy in your presence,
with eternal pleasures at your right hand.
Psalm 16: 5-11
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