We met with my reconstructive surgeon this morning. He was thrilled with how well the incisions are healing up. He feels it is best to delay reconstruction until we are finished with the "hard core" chemotherapy drugs (first five months), as the risks of healing complications and infection is too great otherwise. We are in no hurry to complete reconstruction and he said we could wait years if we wanted. Right now, we are leaning towards doing reconstruction within a month or two from "hard core" chemo completion, but that could change to become a longer time frame if my body needs more time to recover from chemo.
I was correct about the cause of my range of motion issues in my shoulder (see previous blog). I mentioned my concerns to my reconstructive surgeon and he immediately sent me to a physical therapist. It sounds like the therapist I saw specializes in range of motion issues with post mastectomy/lymph node dissection. She confirmed my suspicions, and I indeed have what she referred to as "cording", otherwise known as axillary web syndrome. She took the time to demonstrate and explain a few stretches that may be beneficial for me. She said the cording will resolve itself, and sometimes the stretching helps and sometimes it can make it worse. So I will use my own judgement as to if and how much stretching I do, based on the results I see. I don't have to worry about my range of motion being permanently damage, she said it always resolves itself.
We didn't learn a lot new at our Oncology appointment. Treatment stands pretty much the way they thought it would based off pre-surgery information. Pathology tests reconfirmed the fact that my invasive cancer was her2/neu positive, therefore the drug Herceptin is an excellent treatment choice for me. I did learn today that I had more then just one location of invasive cancer on the left side. Pathology found several separate locations of invasive cancer in my left breast. The good thing is testing showed that the cancer did not reach my lymphatic system or my blood system. We are proceeding with the following chemotherapy treatments as more of a preventive measure then anything:
8 weeks of Adriamycin + CTX (administered every other week intravenously)
12 weeks of Taxol + Herceptin (administered weekly intravenously)
9 months of Herceptin (administered every 3rd week intravenously)
5 years of Tamoxifen (I think this is oral)
Seeing as I will be having approximately 14 months of intravenous drugs, I will be needing to have a port inserted. I don't really understand how this procedure works, but I imagine I will find out soon. Essentially, a port gives a site to have my chemotherapy administered without having to locate and correctly enter a vein every time.
I was told that I will lose my hair with my chemotherapy... they said around two and a half weeks after my first treatment. So I got a prescription for a "cranial prosthesis" (wig) and went to the hair and skin center at the hospital at Mayo. They have a program that gives a free wig to cancer patients. So I received a wig that is exactly the same color as my hair and a similar length. I need to have it cut (layered). Essentially, I can use this wig, and if I decide I am a wig person, I can use my prescription and purchase a nicer, more styled wig. If I decide wigs aren't my thing, then the free wig was a learning experience.
It sounds like I won't have to return to Mayo until my reconstructive surgery (which should be late summer, early fall). Next Thursday, we will make a trip to the Cancer Center to meet with the Oncologist who will be overseeing my treatments at our local hospital. Chemotherapy should start shortly after that.
Wednesday, February 24, 2010
Monday, February 22, 2010
Complications
Ok, so maybe what I really have been dealing with isn't truly considered a complication, but it is annoying. I am experiencing what I have self diagnosed as "Axillary Web Syndrome". OK, I confess, I'm a little addicted to searching the internet when I have some unknown symptom. I'm not a hypochondriac though and in my defense, I read a lot of different articles, sites and opinions and I'm pretty aware of what are reliable sites, and what aren't (Mayo has an excellent site!). So my conclusions are based on a lot of information. I am also keenly aware that my self diagnosis could probably be wrong, but reading online helps me decide how promptly I should consider contacting my doctor. Which I guess considering I waited eight months to get a breast lump checked out based on the fact that I self diagnosed myself with a breast cyst, should indicate my method is not working all that great! But, I digress....
Anyway, back to Axillary Web Syndrome. I couldn't find a lot on this, but basically found about this syndrome by searching for my symptoms. Essentially, I can't lift my left arm much higher then a 90 degree angle with out feeling extreme pulling and some pain from directly under my arm pit to down below my elbow. I also discovered a few days ago, while trying to do my daily stretches that my arm pit is "webbed". Ok, if you are seven and have a fascination with Spider Man, that may sound cool, but believe you me, it is not cool. I have discovered I have these tight bands that run from under my armpit down my arm that feel like tight fiddle strings when I stretch. They pull the skin from my arm pit out giving me an honest to goodness "webbed" arm pit, which most would agree is neither practical or attractive. This "cording" has greatly compromised the range of motion in my arm, and honestly the stretches I have been doing haven't been helping, and my symptoms have only gotten worse.
There isn't a lot of information out there on this syndrome, but it does look like it is fairly common in situations where lymph node(s) are removed from the under arm area. (You think they would have warned me about it?). From what I can see, it looks like this syndrome usually resolves itself, anywhere from days to years down the road, and there appears to be debate on how to best treat it. Some say specialized physical therapy several times a week is beneficial... some say that having a therapist "snap" or break the cords is beneficial (sounds about as pleasant as bathing a cat)... and some say to do nothing other than normal stretching and it will eventually resolve on its own.
Well, I called my surgeon's team about this symptom (and a couple other minor annoyances I've been experiencing) last week, and I got the impression they consider themselves done with me, and any issues I may be having I need to deal with my plastic surgeon (even though he hasn't really done anything for me other then close up after surgery). We actually have an appointment with my plastic surgeon on Wednesday, so I guess I won't have to wait too long to have my symptom(s) addressed.
Speaking of Wednesday, we will be heading down to Rochester tomorrow(Tuesday) for Wednesday appointments. Our first appointment will be with the plastic surgeon. I'm guessing this appointment will be for discussing how to best work reconstruction back into the treatment schedule. Oh, and to address my impressive "webbed" armpit. :-)
In the afternoon, we will have an appointment with Oncology to discuss the results of additional pathology they have done on my cancer since surgery and to set up a treatment plan. I haven't decided if I'm excited or nervous for this appointment. Maybe a bit of both? Excited to get the next phase started and nervous to actually open the "Chemo" chapter of this journey.
Anyway, back to Axillary Web Syndrome. I couldn't find a lot on this, but basically found about this syndrome by searching for my symptoms. Essentially, I can't lift my left arm much higher then a 90 degree angle with out feeling extreme pulling and some pain from directly under my arm pit to down below my elbow. I also discovered a few days ago, while trying to do my daily stretches that my arm pit is "webbed". Ok, if you are seven and have a fascination with Spider Man, that may sound cool, but believe you me, it is not cool. I have discovered I have these tight bands that run from under my armpit down my arm that feel like tight fiddle strings when I stretch. They pull the skin from my arm pit out giving me an honest to goodness "webbed" arm pit, which most would agree is neither practical or attractive. This "cording" has greatly compromised the range of motion in my arm, and honestly the stretches I have been doing haven't been helping, and my symptoms have only gotten worse.
There isn't a lot of information out there on this syndrome, but it does look like it is fairly common in situations where lymph node(s) are removed from the under arm area. (You think they would have warned me about it?). From what I can see, it looks like this syndrome usually resolves itself, anywhere from days to years down the road, and there appears to be debate on how to best treat it. Some say specialized physical therapy several times a week is beneficial... some say that having a therapist "snap" or break the cords is beneficial (sounds about as pleasant as bathing a cat)... and some say to do nothing other than normal stretching and it will eventually resolve on its own.
Well, I called my surgeon's team about this symptom (and a couple other minor annoyances I've been experiencing) last week, and I got the impression they consider themselves done with me, and any issues I may be having I need to deal with my plastic surgeon (even though he hasn't really done anything for me other then close up after surgery). We actually have an appointment with my plastic surgeon on Wednesday, so I guess I won't have to wait too long to have my symptom(s) addressed.
Speaking of Wednesday, we will be heading down to Rochester tomorrow(Tuesday) for Wednesday appointments. Our first appointment will be with the plastic surgeon. I'm guessing this appointment will be for discussing how to best work reconstruction back into the treatment schedule. Oh, and to address my impressive "webbed" armpit. :-)
In the afternoon, we will have an appointment with Oncology to discuss the results of additional pathology they have done on my cancer since surgery and to set up a treatment plan. I haven't decided if I'm excited or nervous for this appointment. Maybe a bit of both? Excited to get the next phase started and nervous to actually open the "Chemo" chapter of this journey.
Thankful
Once again, we were the recipients of extraordinary generosity. Yesterday, we attended yet another benefit to help lessen the additional financial burden that comes with our situation. Once again, it was humbling to see the willingness of everyone to help and attend... we are so thankful!
Yesterday I enjoyed seeing a lot of people that I haven't seen since we moved. I also met some new people (thank you for supporting me, even though you don't know me). We were surprised to show up and find that so many family members had traveled from hours away to attend and help out. And I had the pleasure of visiting with some dear friends. I know I have the best friends a girl could possibly have. Friends that have given of so much over the past few months to lessen my burden. Dear friends who worked so hard in organizing yesterdays event. Friends who showed up to support me and give me hugs! I can't even think of the right word to describe how I feel... but blessed and thankful is about as close as I can get, but it is more then that.
It's hard to imagine that just a couple of short months ago, I set foot on a journey I knew would be hard. A journey I started with tears in my eyes, a heavy weight in my heart and horribly scary thoughts running through my mind. I never imagined that this journey would also entail as many blessings as we have seen. It almost seems counter intuitive to be going thru cancer and yet being able to lay my head down on my pillow every night with so much to be thankful for and feeling so blessed at the end of my day.
I'm not very good at memorizing scripture, but at the beginning of this journey there were a couple of Bible verses that kept running thru my head. One of these was Romans 8:28 which reads "And we know that in all things God works for the good of those who love him, who have been called according to his purpose.". I wanted so much to claim this verse and I finally got to the point where I did, in faith. I didn't doubt God's ability to work good from a bad situation. I didn't doubt that I love God. I doubted that I could be called to God's purpose. Did I really have anything to offer that could be used for God's purpose. I mean God is a big God. What could I possibly bring to the table for His purpose? I wanted to believe I was called, I really wanted to be called, but honestly, I felt too insignificant and unworthy to be called.
The further I've gotten into this journey, the more I realize how selfish my interpretation of Romans 8:28 has been my entire life. God doesn't promise that just because I'm a Christian He will wave his magic wand over my bad situations and "POOF", it's happily ever after. His promise is He will work "all things" for the good of those who love him. Now I'm not a theologian, so I may be way off base, but I am starting to see that God working all things together for good is working the totality of ALL situations. Not just mine, not just yours, but everybody's situations together. So an individual situation may turn out good, bad, or somewhere in between. But we are promised that all of these situations are orchestrated together by God to make the overall picture good.
As believers, what should be our purpose? To bring glory to God! So even if our personal situation has a sad or tragic ending, that ending will be used by God in his orchestrated plan to bring Him glory, which is good. This makes us called according to God's purpose... serving as an instrument to bring Him glory. Each one of us are singular instruments, that alone, may not sound all the great, but in totality with God's plan and all His other instruments, a beauty and goodness is orchestrated to bring glory to God.
Yesterday I enjoyed seeing a lot of people that I haven't seen since we moved. I also met some new people (thank you for supporting me, even though you don't know me). We were surprised to show up and find that so many family members had traveled from hours away to attend and help out. And I had the pleasure of visiting with some dear friends. I know I have the best friends a girl could possibly have. Friends that have given of so much over the past few months to lessen my burden. Dear friends who worked so hard in organizing yesterdays event. Friends who showed up to support me and give me hugs! I can't even think of the right word to describe how I feel... but blessed and thankful is about as close as I can get, but it is more then that.
It's hard to imagine that just a couple of short months ago, I set foot on a journey I knew would be hard. A journey I started with tears in my eyes, a heavy weight in my heart and horribly scary thoughts running through my mind. I never imagined that this journey would also entail as many blessings as we have seen. It almost seems counter intuitive to be going thru cancer and yet being able to lay my head down on my pillow every night with so much to be thankful for and feeling so blessed at the end of my day.
I'm not very good at memorizing scripture, but at the beginning of this journey there were a couple of Bible verses that kept running thru my head. One of these was Romans 8:28 which reads "And we know that in all things God works for the good of those who love him, who have been called according to his purpose.". I wanted so much to claim this verse and I finally got to the point where I did, in faith. I didn't doubt God's ability to work good from a bad situation. I didn't doubt that I love God. I doubted that I could be called to God's purpose. Did I really have anything to offer that could be used for God's purpose. I mean God is a big God. What could I possibly bring to the table for His purpose? I wanted to believe I was called, I really wanted to be called, but honestly, I felt too insignificant and unworthy to be called.
The further I've gotten into this journey, the more I realize how selfish my interpretation of Romans 8:28 has been my entire life. God doesn't promise that just because I'm a Christian He will wave his magic wand over my bad situations and "POOF", it's happily ever after. His promise is He will work "all things" for the good of those who love him. Now I'm not a theologian, so I may be way off base, but I am starting to see that God working all things together for good is working the totality of ALL situations. Not just mine, not just yours, but everybody's situations together. So an individual situation may turn out good, bad, or somewhere in between. But we are promised that all of these situations are orchestrated together by God to make the overall picture good.
As believers, what should be our purpose? To bring glory to God! So even if our personal situation has a sad or tragic ending, that ending will be used by God in his orchestrated plan to bring Him glory, which is good. This makes us called according to God's purpose... serving as an instrument to bring Him glory. Each one of us are singular instruments, that alone, may not sound all the great, but in totality with God's plan and all His other instruments, a beauty and goodness is orchestrated to bring glory to God.
Friday, February 12, 2010
Church Benefit
It is a very humbling experience to be the recipient of people's extraordinary generosity... generosity so encompassing that saying "Thank You" just doesn't sound like enough. I sat back last night at the benefit our church put on to support us and watched as hundreds of people came together and supported me and my family in this hard time. From the beautifully decorated tables, delicious food (and all that went into preparing and serving it), clean up, and silent auction/raffle table... to all the people who stopped by to eat.... each and everyone of you played a essential part in showing us what I feel is a reflection of Christ's love. It truly was an overwhelming experience, one that I will never be able to repay in my lifetime.
One thing I think this whole experience has taught me is the power EACH one of us plays in carrying other people thru tough times. I have often felt in the past that what I have to offer others is so little, that often I have not helped when I should have. The last couple of months has shown me that if each one of us do what we can to help others (no matter how big or small), it all adds up incredibly. God orchestrates each "loaf" and "fish" that each person willingly shares to meet all needs bountifully. It has opened my eyes and I pray they stay open, so I can pay forward what I can in the future.
So to all who were involved in last night's benefit. Thank you! You gave of your time, your money, your resources and your heart. I owe my thanks to you in so many ways. Thank you for supporting me and my family like you did and for helping to carrying us thru this time.
One thing I think this whole experience has taught me is the power EACH one of us plays in carrying other people thru tough times. I have often felt in the past that what I have to offer others is so little, that often I have not helped when I should have. The last couple of months has shown me that if each one of us do what we can to help others (no matter how big or small), it all adds up incredibly. God orchestrates each "loaf" and "fish" that each person willingly shares to meet all needs bountifully. It has opened my eyes and I pray they stay open, so I can pay forward what I can in the future.
So to all who were involved in last night's benefit. Thank you! You gave of your time, your money, your resources and your heart. I owe my thanks to you in so many ways. Thank you for supporting me and my family like you did and for helping to carrying us thru this time.
Friday, February 5, 2010
After Surgery...
Well, today is one week post surgery, and I must say I did not think I would be feeling this good! I have not taken my prescription pain meds for over two days and am relatively comfortable. I just got my last drain taken out and it is wonderful to not have tubes to take care of and worry about the kids grabbing.
I will summarize the last week and a half.
Last Thursday we met with my surgeon and plastic surgeon's teams, just to make sure we all were on the same page with what to expect for surgery. Then we went over to the hospital and got some radioactive injections, so they would be better able to find the lymph nodes during surgery.
We were at the hospital bright and early Friday morning. We met a couple who is a few years into a similar situation and had some prayer time. My husband and two of my brothers kept me company while I was waiting for surgery. Then they took me back to preop, gave me some preemptive pain medication and a few shots in the back to deaden my chest nerves for up to two days. I think it was about 10:30 when I got into the operating room. The next thing I knew, I was waking up and it was 5:00.
Going into surgery, the plan was to do immediate reconstruction, but unfortunately that was not possible. They found cancer so close to the skin layer (they said they have never seen it that close without seeing symptoms of it on the skin), that they ended up removing an area of skin. Since the skin was thinned out so much and had additional wounding to heal up, the plastic surgeon decided it would be best to delay reconstruction.
I spent the night in the hospital and was discharged around 2:00 p.m. on Saturday. The next few days I spent mostly lounging on the couch or sleeping in bed at my brother's house. I had very little pain until Tuesday afternoon during one of our drain tube cleaning sessions and felt this intense burning pain that wrapped from underneath my arm and around my back. It literally felt like my back was in flames for about 15 minutes. I quickly took a pain pill and waited for it to kick in and then we called the surgeon's team. We were told that more then likely, it was an inflamed nerve that the drain tube was irritating. This pain continued to happen every time we tried to clean the drain. This same day we got the call from genetics saying my genes testing showed that I did not have the brca-1 or brca-2 gene mutations. This is excellent news, for myself and many of my first degree relatives!
Wednesday morning we woke up and packed our car for home, and then headed to Mayo for our post operative check. The surgeon was extremely pleased with how well the incisions were healing and I got one of my two drains removed. They also told us we could be done "stripping" the remaining drain tube as that was causing excruciating pain and they felt the drain was maintain well enough on its own. They were also very pleased with the pathology results. All of the margins on the cancer were excellent! My "worse" margin was more then double of what they consider a good margin to be. My final lymph node tests came back with no indication of cancer. With all the information gathered thru surgery, they have ranked my cancer as Stage 1, which has an excellent prognosis! We were so happy we had a celebratory lunch at Red Lobster on the way home. We had a lot of reasons to celebrate. We arrived home Wednesday evening.
It is so nice to be home, but it is hard to be Mom, yet not be able to "do" Mom things. My oldest had a hard time with us being gone and missed us very much. She informed me "Mom, I missed you so much, that I just went in your closet and cried. You've been gone too long. Don't ever leave me again!" all thru a flood of tears. Our next oldest has been getting tummy aches (what happens when he is worried) and came home from school yesterday and ran to his room and bawled. He said he didn't know why he was so sad, but just needed to cry. Our little ones are having a hard time with not being able to be "up" with Mommy. But I guess all this is part of what we have to go thru.
We have to return to Mayo in a couple of weeks to meet with Oncology and set up any additional treatment plans which may be needed.
I will summarize the last week and a half.
Last Thursday we met with my surgeon and plastic surgeon's teams, just to make sure we all were on the same page with what to expect for surgery. Then we went over to the hospital and got some radioactive injections, so they would be better able to find the lymph nodes during surgery.
We were at the hospital bright and early Friday morning. We met a couple who is a few years into a similar situation and had some prayer time. My husband and two of my brothers kept me company while I was waiting for surgery. Then they took me back to preop, gave me some preemptive pain medication and a few shots in the back to deaden my chest nerves for up to two days. I think it was about 10:30 when I got into the operating room. The next thing I knew, I was waking up and it was 5:00.
Going into surgery, the plan was to do immediate reconstruction, but unfortunately that was not possible. They found cancer so close to the skin layer (they said they have never seen it that close without seeing symptoms of it on the skin), that they ended up removing an area of skin. Since the skin was thinned out so much and had additional wounding to heal up, the plastic surgeon decided it would be best to delay reconstruction.
I spent the night in the hospital and was discharged around 2:00 p.m. on Saturday. The next few days I spent mostly lounging on the couch or sleeping in bed at my brother's house. I had very little pain until Tuesday afternoon during one of our drain tube cleaning sessions and felt this intense burning pain that wrapped from underneath my arm and around my back. It literally felt like my back was in flames for about 15 minutes. I quickly took a pain pill and waited for it to kick in and then we called the surgeon's team. We were told that more then likely, it was an inflamed nerve that the drain tube was irritating. This pain continued to happen every time we tried to clean the drain. This same day we got the call from genetics saying my genes testing showed that I did not have the brca-1 or brca-2 gene mutations. This is excellent news, for myself and many of my first degree relatives!
Wednesday morning we woke up and packed our car for home, and then headed to Mayo for our post operative check. The surgeon was extremely pleased with how well the incisions were healing and I got one of my two drains removed. They also told us we could be done "stripping" the remaining drain tube as that was causing excruciating pain and they felt the drain was maintain well enough on its own. They were also very pleased with the pathology results. All of the margins on the cancer were excellent! My "worse" margin was more then double of what they consider a good margin to be. My final lymph node tests came back with no indication of cancer. With all the information gathered thru surgery, they have ranked my cancer as Stage 1, which has an excellent prognosis! We were so happy we had a celebratory lunch at Red Lobster on the way home. We had a lot of reasons to celebrate. We arrived home Wednesday evening.
It is so nice to be home, but it is hard to be Mom, yet not be able to "do" Mom things. My oldest had a hard time with us being gone and missed us very much. She informed me "Mom, I missed you so much, that I just went in your closet and cried. You've been gone too long. Don't ever leave me again!" all thru a flood of tears. Our next oldest has been getting tummy aches (what happens when he is worried) and came home from school yesterday and ran to his room and bawled. He said he didn't know why he was so sad, but just needed to cry. Our little ones are having a hard time with not being able to be "up" with Mommy. But I guess all this is part of what we have to go thru.
We have to return to Mayo in a couple of weeks to meet with Oncology and set up any additional treatment plans which may be needed.
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