Monday, May 3, 2010

No News is Great News! =)

It's been a long time since I updated everyone. We are getting to a point where updates will be few and far between as I am cancer free and intend to stay that way. I do, however, have a few updates for all of you wondering how the last month has gone...

1) Echocardiogram results:

My echocardiogram (heart test) was relatively unchanged. This means that I have been approved to continue the infusion of Herceptin every three weeks. Taking Herceptin (a targeted therapy drug) has proven to reduce the chance of reoccurrence. Hopefully, I can continue this therapy until completion which would be until the end of September.

2) The decision about radiation:

After much research and debate, I decided that I'm not going to go through radiation. My goal is to make the best choice for me. And, since I had a bilateral mastectomy, I'd like to keep other parts of my body that aren't part of the problem unaffected. In my opinion, the risks outweigh the benefits for my specific case.

3) Physical Therapy:

I am seeing a physical therapist twice a week with great results. I hope to achieve full range (180 degrees) of motion with my right arm. I started out at 140 degrees. On 4/22, I reached 156 degrees and on 4/29, I reached 162 degrees. All these measurements were taken before the therapist stretched and massaged the cording under my arm. I'm excited to report that immediately following the stretching and massage, I did actually reach 180 on 4/29. There is still an 18 degree difference between before and after stretching that I want to close the gap on but to actually reach 180 is fantastic. We are staying the course to hopefully achieve my goal of full mobility!

3) The Race for the Cure:

On Saturday, I participated in the Susan G. Komen, Race for the Cure in Winston Salem. Not only did I complete the 5K (plus, a few extra miles due to far away parking), but Doug, Aidan and Regan also completed the 5K. Aidan ran the whole way. Doug ran about half of it. And, Regan and I did mostly walking with a few sprints of running when Regan felt the need to go fast. A good friend, Larissa, and her team "Charity Chicks", adopted me into their group for the event. What a great bunch of women! Thank you!

4) Follow up visit with the plastic surgeon:

This morning, Doug and I travelled to Chapel Hill to discuss the final stages of reconstruction with Dr. Halvorson. There are three options for nipple reconstruction. I believe I will be doing the "CV flap" and areola tattoo. However, I've decided to wait until the end of August for this procedure so I can enjoy the summer! It takes about 5-7 days to heal but Dr. Halvorson recommends that I not swim for 3 weeks following the procedure. Overall, Dr. Halvorson is pleased with my result and I'm excited that I'm nearing the end of this journey!

Other than that, I've been staying busy with family and friends and feeling great.

Monday, March 29, 2010

My right side is finally healing!

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.

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...)

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!

Monday, February 22, 2010

Today's Appointment with the Plastic Surgeon

At 8 this morning, Liza drove me to Chapel Hill for my 9:15 doctor's appointment. Unfortunately, we didn't get to see the doctor until after noon! He was extremely backed up. We finally got home at 2pm and I went right to sleep. I was EXHAUSTED!

The good news... They removed the last drainage tube. Yay! It was very uncomfortable and the "eraser shaped" incision where the tube came out was irritated.

As for the main (mastectomy) stitches, the slight necrosis (cell death) that I had along this line is looking better. I must admit, this did concern me. I really didn't want to have another surgery to remove this skin and perhaps, lose the implant!

Dr. Halvorson said that the lumpiness around my implants should smooth out with time as the skin continues to stretch. And, it will take up to three months for my implants to "drop". (They are pretty high right now.) Overall, Dr. Halvorson says that I look good.

I do have some increased bleeding along the incision on my right breast. He said the incision is an open wound. So, in addition to putting ointment on the incision, he told me to avoid increasing my blood pressure. He wants me to move but, for example, when I'm walking, I should walk slowly. I shouldn't pick anything up that weighs more than 5 pounds, etc. It is VERY tough to have others do things for me. But, I want the best results possible so I will work hard at not working! =)

I slept until 5pm so I'm behind with my physical therapy for the day. It's amazing how fast the day can go! As soon as I submit this post, I'll do another set...

Thursday, February 18, 2010

Three Appointments in Chapel Hill

Yesterday was an extremely busy day for me. I had three appointments in Chapel Hill... with the first at 9:30am. I met with the radiation oncologist, the general surgeon and the plastic surgeon.

The pathology report came back and confirmed my last MRI report. There was no evidence of malignancy in my breast or lymph nodes. Although no invasive carcinoma was identified, they did find two very small "residual foci of ductal carcinoma in situ (DCIS), grade 2, solid pattern with focal involvement of the lobules (adjacent to clip within upper outer quadrant, and within lower outer quadrant)". This means that there were two small areas where pre-cancerous cells were found. But, other than that, I was cancer free going into the surgery. But, it was good to get the DCIS out since it really was a matter of time before that would become invasive.

The plastic surgeon says that I look good. I have a little necrosis (cell death) near the surgical scar area. As long as it doesn't worsen, I shouldn't have to have another surgery to remove it. (That would be the worst case scenario. It looks pretty good, though.) I see the plastic surgeon again on Monday.

The best part about yesterday was that I got to have three of my four drainage tubes removed. What a difference it makes. I can't wait to be free of the last one but I know that it could be a while.

Recovery from surgery has been harder than I thought it would be. My left side and arm mobility hasn't been that bad. However, my right arm is a different story! Since they removed the lymph nodes under my right arm, I have much more pain and can't raise my right arm much. (Typing this update is very difficult even with the keyboard on my lap! When possible, I'm typing most letters with my left hand.)

I have slept and slept and slept. My sister, Liza, arrived last night and I wish I could be awake more hours to visit with her. But, since she traveled from Paris, it's not so bad since she is jet lagging anyway! =)

My mom is making sure that Liza knows of all the physical therapy exercises that I have to do five times a day. She has also learned how to empty and measure my last drain tube and is great with getting me my medicines on schedule.

Thanks for the cards and flowers and food... We really appreciate the love!

Sunday, February 14, 2010

The First Days of Recovery...

I stayed both Thursday & Friday nights in the hospital. I don't know why I was ever told I may be released after just one night. I had a lot more done than the normal patient gets done during breast surgery. While I was there, I learned that the plastic surgeon said it would be two to three nights for what I had done.

Since I had the lymph nodes removed from under my right arm, I'm still having trouble moving my right arm without pain. But, my mom has been making sure I do the physical therapy and breathing exercises to aid my recovery. It is a little frustrating to have limited mobility. But, I have to remember that I will get everything back but I have to be patient! (I'm not always so patient... so, I guess, I'm working on that skill set.)

I can't wait until I can get the drainage tubes removed. I have four tubes (two tubes on my left and two on my right) that literally come out of my body! The fluid they collect has to be emptied and measured during the day. The bulbs have to be clipped onto my clothes so they don't pull on the incisions they exit. The incision area is pretty sore. In addition, they make taking a shower especially difficult! I hope I can get these removed soon.

I've been spending most of my days in bed. I've got appointments tomorrow, Wednesday and on the 22nd in Chapel Hill. It will be good to get out!

Thursday, February 11, 2010

Surgery is a Success

Three hours into the surgery, at 10:30, Dr. Demore finished her part of the surgery. She told Doug and my mom that the mastectomy was complete and the surgery was going very well and that Dr. Halvorson had already completed reconstruction on the right breast. Two hours later, around 12:30, Dr. Halvorson told Doug and mom that I was able to have the immediate reconstruction with two 600cc silicone implants. He said that he believed he was able to achieve a very good result. He said I would be sore and that there would be tightness in my chest from the implants, but that it should go away after a day or two. I felt rather sick coming off the anesthesia and needed additional nausea medication. I was placed in the recovery room after surgery for over 5 hours, until I could get a private room. I was allowed a visitor once an hour for five minutes at a time, however, that didn't work out as planned. I was there a very long time and Doug and mom were only able to visit once each for 5 minutes. That was the most frustrating part. Finally, by 6pm, I got my private room (#6236 Memorial Hospital), with two recliners for mom and Doug and my pillow from home. The pillow from home is most wonderful.

I can't see the results of the surgery as I have bandages. There is a lot of pain, especially on my right side where the lymph nodes were removed. They even had to change my pain medication to something stronger than morphine. I can't remember the name...probably because I'm on it.

I'm very happy that now I can drink something because I was extremely thirsty and haven't had anything to eat or drink since last night at dinner. My throat is still scratchy from the intubation.

Thanks to all of you for your prayers and good wishes. On with recovery!

Wednesday, February 10, 2010

Surgery is in 9 hours, 30 minutes

I can't believe that my surgery is already tomorrow. I'm OK if I don't think about it. But, time is marching forward. The kids are at the Bradford's and our bags are packed for Chapel Hill. Soon, the alarms will be set for 4:30am. We have to be in Chapel Hill by 6am. Ugh.

Surgery starts at 7:30am. I'll be at North Carolina Memorial Hospital. Please pray for my doctors, Dr. Demore & Dr. Halvorson, my family and for me tomorrow. I'm scared but I'll get through this...

Thanks to everyone for the cards, the Love Book, the surprise lunch today at work, the emails, texts, calls and prayers. They mean the world to me. Thank you!

Wednesday, January 27, 2010

I know you all need an update. So, I'm just going to copy and paste what I just wrote to a friend:

Regarding my decision, no doctor (not even my oncologist) thinks I should go without a mastectomy. The cancer I have (had?) is extremely aggressive and they don't want to miss one cell. There is no way to be 100% sure that all of the cancer is gone. Per my oncologist, if something were left, it could mutate and the drugs that work now may not work in the future. Since there aren't many drugs that I can use with the type of cancer I have this would be risky. What if Herceptin, which is extremely effective now, no longer worked for me? I'm really afraid of surgery and recovery so I was hoping for different news... ugh! I was so happy after the MRI and now I feel like I've been hit in the stomach. I'm going to Chapel Hill today and will have more docs telling me the same, I'm sure. I definitely hate cancer.

I'm sorry I didn't respond to calls yesterday... I just couldn't. My emotions have gotten the best of me. But, know that I appreciate all of the continued love and support! I really do. And, even though I'm down right now, I'll get through it.

From the bottom of my heart, thank you! =)