Last week, the mastectomy wound on my right side finally started to close up. There are still three areas that haven't come together completely but I'm getting there! I can't wait until I can take a bath which is something I haven't been allowed to do yet. With how long this healing process is taking, I'm thankful that my surgery wasn't in the summer. I love going to the pool too much!
Doug's mom was here last week and she was so helpful with the kids. I enjoyed our long talks in the mornings... And, we all had a blast playing "Apples to Apples" (and other games) together after dinner in the evenings. The days went so fast! Thanks, Mom! =)
Last Wednesday, I went to my first physical therapy appointment. I couldn't believe what a difference an hour made to my range of motion. The "massage" (ouch!) helped stretch the scars under my right arm. The therapist was able to make the scar tissue "pop" once... this is good since it is breaking up the scar tissue that is limiting my mobility. I've been able to get the scar tissue to pop once myself and today I went back for my second PT appointment and it popped again. Woo Hoo! I really want to get my full range of motion back so this is very important to me.
I must say that today's physical therapy appointment probably hurt more than the last one. He really pushed hard. I just breathed through the pain. I'm determined to get through this successfully. Around 9 weeks, scar tissue settles and becomes permanent. Since I have a limited amount of time to deal with this mobility issue, I have two more appointments this week and two appointments set up for next week. It's important to be aggressive and it is already helping. I wish I could have started PT earlier!
Doug and I also went to see a radiologist and although I had a bilateral mastectomy, they want me to also undergo radiation. I really don't like what I have learned about radiation. It is so damaging. The radiologist said that she would only radiate the right side since that is the only side I had cancer cells on so I wouldn't damage my heart. But, I'm very concerned about damaging my right lung 10-15%. Dr. Wentworth wants to cut down my chance of re-occurrence but the risk (damage to my body) for the benefit (reduce chance of re-occurrence by 25%) may not be worth it to me. In addition, if my survival rate is 90%, it only increases to 92%.
One thing that bothered me during the consult was that Dr. Wentworth kept quoting stats as if I had been stage three and believed that my survival rate is lower than 90%. (Are you kidding me?!) We will never know exactly what my stage was since I had chemo first. Even though the chemo took me down to a stage zero before surgery, that doesn't matter to her. The re-occurrence rates are so much higher for a stage III than they are for a stage IIb. I've got some questions for my oncologist but I'm not sure that his answers will even convince me that it is worth it. This seems like such a subjective numbers game to me right now.
The worst part about making a good decision is that we don't have any good statistics to sink our teeth into. The info I want to see (data on other 40 year olds with the same cancer and treatment) hasn't matured yet. I don't like relying on old data. I also don't like increasing my chances for other cancers, ie. lung cancer.
Yes, statistically speaking there is a VERY small chance that I could get lung cancer from radiation yet the head of radiology in Chapel Hill admitted that he had a patient get it and I learned from someone else in a different state that they knew of someone getting lung cancer from radiation. Is this coincidence or perhaps another example of new data that hasn't yet matured?
I'm also concerned that radiation would increase my chances of lymphedema. More info on this condition is below. You'll understand why I'm concerned about this possible condition. (Note: I didn't post any images of lymphedema because the extreme cases are very scary... limbs don't even look like limbs. Unbelievable!) Unfortunately, I did have all my lymph nodes under my arm removed. So, my risk is real and if I get it, there is no cure... just management of the condition.
To end on a positive note, I want to say thank you to my husband. He has been my rock. I know this must be tough on him, too. Yet, he is always there for me through all of the ups and downs. He's my sounding board and my defender. I really don't know what I would have done without him holding my hand through all of this. Thank you, Doug! I love you!
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What is Lymphedema?
Lymphedema refers to swelling that generally occurs in one of your arms or legs.
Lymphedema is caused by a blockage in your lymphatic system, an important part of your immune and circulatory systems. The blockage prevents lymph fluid from draining well, and as the fluid builds up, the swelling continues.
There's no cure for lymphedema, but it can be controlled. Controlling lymphedema involves diligent care of your affected limb.
Causes:
Your lymphatic system is crucial to keeping your body healthy. It circulates protein-rich lymph fluid throughout your body, collecting bacteria, viruses and waste products. Your lymphatic system carries this fluid and harmful substances through your lymph vessels, which lead to lymph nodes. The wastes are then filtered out by lymphocytes — infection-fighting cells that live in your lymph nodes — and ultimately flushed from your body.
Lymphedema occurs when your lymph vessels are unable to adequately drain lymph fluid, usually from an arm or leg.
Any condition or procedure that damages your lymph nodes or lymph vessels can cause lymphedema. Causes include:
* Surgery can cause lymphedema to develop if your lymph nodes and lymph vessels are removed or cut. For instance, surgery for breast cancer may include the removal of one or more lymph nodes in your armpit to look for evidence that cancer has spread. If your remaining lymph nodes and lymph vessels can't compensate for those that have been removed, lymphedema may result in your arm.
* Radiation treatment for cancer can cause scarring and inflammation of your lymph nodes or lymph vessels, restricting flow of lymph fluid.
* Cancer cells can cause lymphedema if they block lymphatic vessels. For instance, a tumor growing near a lymph node or lymph vessel could become large enough to obstruct the flow of the lymph fluid.
Complications:
Lymphedema in your arm or leg can lead to serious complications, such as:
* Infections. Lymphedema makes your affected arm or leg particularly vulnerable to infections. Possible infections include cellulitis — a serious bacterial infection of the skin — and lymphangitis — an infection of the lymph vessels. Any injury to your arm or leg can be an entry point for an infection.
* Lymphangiosarcoma. This rare form of soft tissue cancer can result from the most severe cases of untreated lymphedema. Possible signs of lymphangiosarcoma include blue-red or purple marks on the skin.
Monday, March 29, 2010
Tuesday, March 16, 2010
I'm so tired...
Today, I can truly say that I was tired to the bone! I went to see Dr. Rubin this morning and to get Herceptin. I also had a long overdue dentist appointment... Three appointments in one day left me completely exhausted!
I made an appointment to see a physical therapist here in Greensboro. The scar tissue from removing the lymph nodes under my right arm is still causing some mobility and pain issues. My plastic surgeon had mentioned that when he does delayed reconstruction, he snips those scars to help the patient with mobility in the arm. I find myself wondering if there is an easy way to snip this scar tissue now... I hate the "guitar strings" that you can actually see under my arm. I keep trying to stretch them out but the strings keep tugging at my skin and don't seem to be getting any looser. In fact, there is some pain that extends all the way to my wrist now. The "pulling" sensation has gone beyond my elbow. I'm hoping the physical therapist can help!
Last week, we noticed that the mastectomy wound on my right side was spreading apart more. After some emailed pictures and a phone call, Dr. Halvorson said that we could pull the wound together as tightly as possible and not remove the steristrips for a week to see if the dermis would come together. If this doesn't work, he said that I could come back and he could cut my skin to make neat lines and stitch the wound back together. He doesn't want to restitch if possible and is concerned that less skin would pull even more on the stitches. I'm hoping that this wound can close up with the steristrips. Since I was told not to take off the steristrips, we found that we could replace one at a time with a better result. With the other steristrips in place, we have been able to get the skin to come together without much gaping at all. Luckily, the plan does look like it may be working. The outer edges of the wound seem to be healing shut. I can't take off the steristrips yet to check but I'm crossing my fingers for a good result. (On a side note, I can't believe that this wound hasn't healed. It's been a month already!)
Before signing off, I want to send a Happy Birthday greeting to my niece, Kadia. She turned 7 today. We got to sing happy birthday and see her beautiful face on the web-cam. I know Greta is excited to get back to her daughter in Paris and celebrate with a big party this weekend. A big thanks goes out to Greta for being here with me!
To the rest of you... Happy Saint Patrick's day tomorrow! I will be napping heavily during the day so I can recite a limerick that I wrote at the St. Patty's day festival tomorrow night. For the third year in a row, I'm a finalist in M'Coul's limerick contest. It's so much fun.
Erin Go Bragh! (I love being Irish...)
I made an appointment to see a physical therapist here in Greensboro. The scar tissue from removing the lymph nodes under my right arm is still causing some mobility and pain issues. My plastic surgeon had mentioned that when he does delayed reconstruction, he snips those scars to help the patient with mobility in the arm. I find myself wondering if there is an easy way to snip this scar tissue now... I hate the "guitar strings" that you can actually see under my arm. I keep trying to stretch them out but the strings keep tugging at my skin and don't seem to be getting any looser. In fact, there is some pain that extends all the way to my wrist now. The "pulling" sensation has gone beyond my elbow. I'm hoping the physical therapist can help!
Last week, we noticed that the mastectomy wound on my right side was spreading apart more. After some emailed pictures and a phone call, Dr. Halvorson said that we could pull the wound together as tightly as possible and not remove the steristrips for a week to see if the dermis would come together. If this doesn't work, he said that I could come back and he could cut my skin to make neat lines and stitch the wound back together. He doesn't want to restitch if possible and is concerned that less skin would pull even more on the stitches. I'm hoping that this wound can close up with the steristrips. Since I was told not to take off the steristrips, we found that we could replace one at a time with a better result. With the other steristrips in place, we have been able to get the skin to come together without much gaping at all. Luckily, the plan does look like it may be working. The outer edges of the wound seem to be healing shut. I can't take off the steristrips yet to check but I'm crossing my fingers for a good result. (On a side note, I can't believe that this wound hasn't healed. It's been a month already!)
Before signing off, I want to send a Happy Birthday greeting to my niece, Kadia. She turned 7 today. We got to sing happy birthday and see her beautiful face on the web-cam. I know Greta is excited to get back to her daughter in Paris and celebrate with a big party this weekend. A big thanks goes out to Greta for being here with me!
To the rest of you... Happy Saint Patrick's day tomorrow! I will be napping heavily during the day so I can recite a limerick that I wrote at the St. Patty's day festival tomorrow night. For the third year in a row, I'm a finalist in M'Coul's limerick contest. It's so much fun.
Erin Go Bragh! (I love being Irish...)
Wednesday, March 3, 2010
Time for an update!
I'm sorry I haven't updated my blog in a while. The days went by quickly while I slept. Luckily, I'm more active now but I still tire easily if I do more than one outing in the day.
A day after my last update, Feb 23rd, I had my blood tested, met with my oncologist and sat in the chemo chair for Herceptin. Dr. Rubin was impressed that most of my DCIS had melted away. (It usually only works on invasive cancer.) I was glad that my blood looked good so I was able to start my "once every three weeks" dose of Herceptin.
On Feb 25th, I noticed that the bleeding on my right side was increasing as the wound seemed to separate more. After emailing a picture to my plastic surgeon, he wanted me to use steristrips to pull the wound together and come back to Chapel Hill the following morning. Dr. Halvorson liked how the steristrips were holding the wound together and said to continue this and to let him know if anything got worse.
I have to thank my sister, Liza, for all the time spent driving me to appointments in Chapel Hill and Greensboro. It seemed that we spent a lot of my awake time in the car and in doctors offices. Sadly, she had to go back to Paris on the 28th. But, luckily on the same day, my cousin Mary Pat was on her way to Greensboro. (Even more lucky, my cousin and sister got to meet up in the Washington Dulles airport while they waited on their delayed connecting flights! What a coincidence!)
Mary Pat has been here and has been cracking the whip on my physical therapy. I can't wait until I have full mobility back in my arms. I also can't wait until my pectoralis muscle heals (it had to be cut by the plastic surgeon for the one stage reconstruction), so I can't open/close doors, put on my own seat belt, etc. There is nothing like waiting for someone else to do these things for you when you just want to do them yourself! But, most of all, I can't wait for the burning sensation to go away from the back of my arm when I move it to a position it doesn't want to go.
Patience, right?! Overall, I'm glad that the cosmetic result of my reconstruction so far is pretty darn good. I'm also glad that I was able to get all of this done in one surgery. (The original path that they wanted me to follow was to have several surgeries... #1: mastectomy of the right breast #2: mastectomy of the left breast #3: add tissue expanders #4: remove expanders and put in implants... yuck!) I have a lot to be thankful for...
Thanks to all of you for the love book (that made me cry!), flowers, cookie bouquet, cards/emails, pajamas, spa gifts, lunch, dinner, etc. etc. I am TRULY blessed to have so many wonderful, loving people in my life. Love to you all! =)
Tomorrow, I'll say goodbye to Mary Pat in the morning but my sister, Greta, will be here in the evening... (Heck, MP and Greta may be lucky and see each other in Washington Dulles while waiting for their connections!) I'm glad I've had such great help and company through all of this!
A day after my last update, Feb 23rd, I had my blood tested, met with my oncologist and sat in the chemo chair for Herceptin. Dr. Rubin was impressed that most of my DCIS had melted away. (It usually only works on invasive cancer.) I was glad that my blood looked good so I was able to start my "once every three weeks" dose of Herceptin.
On Feb 25th, I noticed that the bleeding on my right side was increasing as the wound seemed to separate more. After emailing a picture to my plastic surgeon, he wanted me to use steristrips to pull the wound together and come back to Chapel Hill the following morning. Dr. Halvorson liked how the steristrips were holding the wound together and said to continue this and to let him know if anything got worse.
I have to thank my sister, Liza, for all the time spent driving me to appointments in Chapel Hill and Greensboro. It seemed that we spent a lot of my awake time in the car and in doctors offices. Sadly, she had to go back to Paris on the 28th. But, luckily on the same day, my cousin Mary Pat was on her way to Greensboro. (Even more lucky, my cousin and sister got to meet up in the Washington Dulles airport while they waited on their delayed connecting flights! What a coincidence!)
Mary Pat has been here and has been cracking the whip on my physical therapy. I can't wait until I have full mobility back in my arms. I also can't wait until my pectoralis muscle heals (it had to be cut by the plastic surgeon for the one stage reconstruction), so I can't open/close doors, put on my own seat belt, etc. There is nothing like waiting for someone else to do these things for you when you just want to do them yourself! But, most of all, I can't wait for the burning sensation to go away from the back of my arm when I move it to a position it doesn't want to go.
Patience, right?! Overall, I'm glad that the cosmetic result of my reconstruction so far is pretty darn good. I'm also glad that I was able to get all of this done in one surgery. (The original path that they wanted me to follow was to have several surgeries... #1: mastectomy of the right breast #2: mastectomy of the left breast #3: add tissue expanders #4: remove expanders and put in implants... yuck!) I have a lot to be thankful for...
Thanks to all of you for the love book (that made me cry!), flowers, cookie bouquet, cards/emails, pajamas, spa gifts, lunch, dinner, etc. etc. I am TRULY blessed to have so many wonderful, loving people in my life. Love to you all! =)
Tomorrow, I'll say goodbye to Mary Pat in the morning but my sister, Greta, will be here in the evening... (Heck, MP and Greta may be lucky and see each other in Washington Dulles while waiting for their connections!) I'm glad I've had such great help and company through all of this!
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