Happy Halloween!!

We went to get Jan's x-ray this morning and everything was fine, apparently the air bubble had been absorbed. We stopped on the way and got some flowers for the nurse that helped her through the day yesterday. The nurse was very appreciative and of course, when we walked in, all the other nurses said "is this the poor sole you were talking about that had such the rough time yesterday?" .......I just stood back and drank my coffee while they all hugged and carried on.... Jan has been sore and tender today where they stabbed her looking for a nice, plump, juicy artery, but other than that, she is good. She took a nap this afternoon, I tried catching up on a little work. Her parents just showed up and she's pumped about halloween. Tomorrow is the first chemo treatment. Wish her luck!

Evening Update: We had a perfect Halloween Eve. Mom and Dad were here so we enjoyed visiting with them. My Dad went Trick or Treating with Jillian, Bret, John and Olivia while Tyler headed out with one of his friends. We moved the Gahlberg's chimnea (yes, we are going to return it some day...) to the front yard and my Mom and I sat by the fire to hand out the candy. We had a lot of kids and it was just so nice to sit outside and relax...I could have stayed out all night...I just don't want this day to end. I talked to Dr. B.s's nurse today and they called me in a scrip to help with nerves and nausea before my first chemo appointment. After getting so sick yesterday I thought it would be a good idea to call and ask for something. I am just hoping things go well....

I am glad this day is over...

The heart test and port surgery were only supposed to take a couple hours, we thought we would be home by noon...unfortunately, things did not go as planned so we finally made it home around 5. The test was no big deal except for once again the tech could not get a vein for the IV..after several attempts he called in the expert and she got it on the first try. Once the test was over we walked over and started prepping for the port insertion. My nurse, Pat, was an angel and had me ready for surgery in no time. Because I was having local anesthesia I was able to chat with everyone in the operating room which made me more comfortable. Then they gave me the good stuff and I don't remember much after that. After surgery I found out that things did not go very well. The port was to be inserted above my left breast but after several tries they were not able to access the vein so they moved to the right side. After a couple tries they got the vein but somewhere in this process they knicked the lining of my lung which caused a sack to develop. The surgeon explained that they were not very concerned but they wanted to observe me for a couple hours and take another x-ray before discharging me. Bret was feeling miserable from an upper resp. infection, but he took good care of me. We finally got another x-ray and saw the doc again around 3:00. He said the tear had not changed much so they wanted me to go home and rest and come back tomorrow for another x-ray. I was glad to be getting out of there but once we started getting ready to leave my blood pressure crashed and I felt very sick. We continued to go through this for another hour until I finally felt well enough to leave. On the way home it hit me again and I vomited in the car but we finally made it home and I crashed in bed for the evening. Tyler took great care of me while Bret and Jillian went to get checked out. They both have upper respiratory infections so they are now on meds. Jillian and I ended the evening by watching the Charlie Brown Halloween special which is my all time favorite...the bright spot of the day!!!

It was a pretty emotional day for me. Getting so sick made me really dread the chemo. Pat and Bret were so good to listen to me, encourage me to be strong and wipe away the many tears throughout the day. This day was certainly one of those "road bumps" that I knew we would run into so I just pray that God will continue to give me the strength to just get through each one. I cried tonight when I read all the sweet messages....your constant support, encouragement and prayers give me the strength to keep going...thank you so much!!!!

Preparing for another day at the hospital...

I am trying to get everything organized so we can get up early tomorrow and get to the hospital. We need to check in at 8 for the heart test and as soon as that is finished we will move over to outpatient surgery. I will have local anesthesia and it should take no more than 30 minutes for Dr. K. to insert the port. I am really not nervous about any of the stuff going on tomorrow but I am getting very nervous about starting the chemo. My first appt. is this Thursday at 2. It was really hard to talk to Tyler this weekend about losing my hair but he did okay with it. For me losing my hair is harder emotionally than having the mastectomy. It's sad to me that so many people have to go through this. We live in a world where appearances are so important.....I am really dreading the first time that I have to see myself with no hair. I know it is only temporary and I pray that I will have the strength to just deal with it and look forward to putting this entire experience behind me. I did visit a wig shop on my lunch today. I was terrified to walk in there because I thought I would start crying. Once I started looking around I was actually surprised at how nice some of the wigs looked. Right away I found a curly one that was in a red shade similar to mine. One of the clerks put me in a chair and let me try it on. I was pretty happy with how realistic it looked. I was shocked to see that it was almost $300. Everything I have read says that you should have at least 2 and so far it sounds like insurance does not cover any of the expense. It seems unfair that insurance would pay for breast reconstruction or breast prosthesis but they expect women to walk around for several months wearing a scarf or hat??? At this point can't even imagine going out in public without a wig on but they say they are so uncomfortable so I might change my mind down the road....I know I need to stop worrying about things that are a few weeks away and just focus on getting through tomorrow....my prayer tonight is for some peace and that God will be with Dr. K. and the other medical staff as they operate on me tommorrow.

Appt. with Dr. B

Today has been a busy day...I guess that's obvious by the fact that there are 2 posts today. Our appointment went well this afternoon. Bret had created a very long list of questions and I also had a few more. We talked in depth about the Oncotype dx test. He said that their results showed that I was just barely ER/PR+ which means that the tamoxifen might not give me the added protection that he had hoped meaning that if there were remaining cancer cells the tamoxifen might not be able to kill them and they might continue to split and grow in another area like my bones, liver or brain. He explained that more and more doctors are looking more at genetic make up of cancer cells compared to the past when they only looked at the size of the tumor. Being able to use these types of tests means that they are really looking at how those cells act and grow. He did say that he contacted other breast cancer specialists since my third opinion did not agree with him. He said after reviewing my case with them they did agree with the more agressive plan. He said he will continue to use my case at his tumor board meetings also.

The plan as it stands right now is that I will go to the hospital on Tuesday morning. I will have a MUGGA scan first which will check my heart. This is important because the first phase of chemo and the Herceptin are toxic to the heart. After I complete the test I will go to outpatient surgery to have a port placed in my chest. This will be left in all during treatment so I will not have to use IV's. I have tough veins to hit so I like this idea. If the test comes back okay I will have my first treatment the next week. I will have 4 months of chemo. This will be done every other week, the chemo is given one day and I go back the second day to receive a shot that will help to boost my white blood cell counts. Once I get through the 4 months I will then get weekly Herceptin injections for 12 months. This drug has some odd side effects but it is not chemo so my hair will start growing again and I should start to feel much better. I can also have the bi-lateral mastectomy done once I fully recover from the chemo treatments. I will also take the tamoxifen for five years after the chemo.

As the hours go by I am feeling more comfortable with this plan. I know that it will not be easy but I have no doubt now that we are using the most aggressive plan to fight this and if I would have a recurrence somewhere down the road I won't have any regrets because I will know that I did all that I could do. I actually even started looking at wigs online and know that I want a short, spunky cut. I plan to go next week and get my hair cut to a much shorter style since I should lose all my hair by Thanksgiving. I read somewhere that you should view your hair loss as a great sign that the chemo is working - I think that is a positive way to view it.

A BIG change in plans...hang on for the ride!

Dr. B called this morning to tell me that the Oncotype dx results came in. This is the test that he told me might change his mind about treatment when we first met. My score was 80 out of 100. Anything over 30 is considered high....I felt like I got punched in the stomach when I heard 80!!!!!!!! This is a newer test that examines the genes in the tumor cell. The results should be used to determine if a patient with early stage cancer would benefit from chemotherapy. He said that the lab in CA actually called him because their results also showed that I was not ER/PR+. Based on these results he recommened that I post-pone surgery for 4 months and start chemo immediately.....The concern with the ER/PR issue is that he was planning on giving me tamoxifan after surgery for 5 years...this drug works to stop any other cancer cells that may be in the system but it works on ER/PR+ cells. He said that he was very concerned by the different ER/PR results along with the high oncotype result, and the Her2+ results. These were all making my case harder to find an easy answer on treatment. He said he discussed my case with his partners and they agreed that I should start chemo. He called Dr. Onc3 that I saw for my third opinion and she said she would not change my plans. She said that the test was for larger tumors than mine and she would stick with the original pathology info. He said that it was ultimately my decision but if it were his wife he would recommend the more agressive treatment.

My biggest concern about the chemo is the affect that it will have on my kids. I don't know how sick I will be and Jillian won't understand why I have no hair and who knows what Tyler will think about it. It just breaks my heart that my kids have to grow up with this horrible disease affecting their lives. This should be a time of innocence and instead they get this shoved in their face...it just doesn't seem fair to them. I will do whatever I have to do to beat this but I will always worry about the impact it has on them.....

Bret and I are meeting with Dr. B. at 3 to go over all of this craziness....please pray for my strength to get through this day.

Sunday update...

It's been a good week...I have been reading a lot about mastectomy recovery and that makes me a little nervous. Nothing about the surgery seems too bad but hearing about how tough the recovery can be is a little more than I expected. I am looking forward to meeting with the plastic surgeon on Friday. I have a much longer list of questions for her this time so it should be a good appointment.

Things at work have been going well. I am busy trying to wrap up as many projects as I can before I leave for surgery. Being busy definitely helps me keep my mind off having cancer....

This weekend was a perfect fall weekend. On Saturday morning Bret surprised us with a trip to the Circleville Pumpkin Fest up by Columbus. It was supposed to be the largest pumpkin fest in the country but unfortunately it turned out to just be a huge carnival....after passing up the pumpkin ice cream, pumpkin pizza, pumpkin cider and pumpkin pie we bought my favorite pumpkin roll and headed back to Cinci. Since we still had the Galberg's chimnea, we decided to invite everyone over to roast hot dogs and s'mores. It was a perfect evening for a fire...we had lots of good food with good friends. It was fun to see all the kids playing outside all evening...it reminded me of playing Hide & Seek and Kick the Can with all my neighbors on Risden Road when I was growing up...Today we went down to the Ohio River for a brunch cruise on a riverboat. It was another beautiful day and we all enjoyed spending time together.

I am so thankful that I have these few weeks before my surgery to relax and spend time with friends and family....these are days that I will cherish for a long time...here are some pics from our Dinner Club and pumpkin patch visit last week and our weenie roast and cruise this weekend. Love to all! Jan

Turning 40...

This birthday certainly turned out a lot differently than I had planned! A few months ago it was all about the big party, the jokes about getting old, etc. As I sit here at the end of the day all I can think about is how lucky I am to have so many wonderful people in my life. So many of you let me know today that you care, and no matter how big or small the gesture what means the VERY most to me is that you are a part of my life. This disease has certainly opened my eyes and helped me see what is really important in life. I am so blessed to have each one of you in my life and I thank God for each of you. Each day I am overwhelmed by your generosity and continued concern and support. "Thank You" never seems like enough but I hope that each of you know that your support is what is helping me fight this disease today and it is what will continue to help me fight in the months ahead..... my hope and prayer is that I will always be as good a friend to all of you in return.

Things I am thankful for today: good friends, my family, healthy and happy kids, a husband that continues to put up with my crap after 15 years, the words "I love you", old friends that I am in contact with again, getting to know new friends better each day, being able to laugh again, being able to not think about having cancer for just a few minutes each day, hugs, feeling good, time out with the girls, my wonderful team of doctors, tons of wonderful birthday cards, a perfect fall day, a feeling of serenity....

What more could a girl want on her 40th Birthday!!! THANK YOU!

Surgery is scheduled!

The date for my bi-lateral mastectomy and reconstruction is November 6th - Election Day. The surgery coordinator said that I should expect to stay in the hospital for 23 hours unless there are complications....this way it is still considered an out patient surgery as long as I am not there for over 24 hours. I am glad to have the date set. I feel great about my decisions on doctors and feel like we are starting to move forward. I am glad to have a little time to mentally and physically prepare for the surgery. I love fall and I am thankful to have this time to enjoy with friends and family.

Last night Bret and I hosted our neighborhood's first Dinner Club of the season. We had a tailgate theme and had approximately 25-30 of our neighbors attend. It was a perfect evening and we even had a fire in the back yard (thank you Galberg's for bringing your chimnea (sp?) over the fence for us and walking the trail to gather fire wood!!). Tyler worked his first evening as a babysitter and had nothing but positive things to say about that....I think we are going to have a harder time getting him to do his chores now....he would rather get paid to babysit for the neighbors! Today the four of us went in search of the perfect carving pumpkins....it was a great day to get out so we visited a local pumpkin patch that also had all kinds of farm animals to pet and Tyler made a quick trip through the corn maze. Those were the bright spots of the weekend - the rest of the weekend has certainly been life as usual....Jillian has been very cranky all weekend. I swear that she has wined or cried at least 5 solid hours....gotta love those temper tantrums with a 4 year old!

Last Thursday I attended my first meeting at the Wellness Center. This is a great support center for people in Cinci with cancer. Genentech (drug manufacture of Herceptin) was putting on a presentation. I didn't learn anything new about the drug but they did have a woman speak that is currently taking Herceptin. She has done very well with it but her story was pretty scary since she was originally diagnosed as Stage II but they did a body scan and found several tumors and she was moved to Stage IV. That was two years ago and she seems to be doing well. I also had a chance to meet with a representative of the Pink Ribbon Girls. It is a young woman's breast cancer support group that was started here in Cinci but it is quickly growing across the nation. I have signed up for the group but I have not attended any events. The girl that I met with was so great and made me feel better about getting involved. I know that they will be a great resource and support system for me. The worst part about the night was that I had a horrible dream about my stage of cancer being changed to IV......when I woke up in the morning I felt like someone had dropped a brick on my head....I just wanted to pull the blanket over my head and hide for the day. Eventually, I got myself together and made it to work......the nights are certainly the worst and hardest times to get through. I can only hope that even that will get better with time....Love to all, Jan

The Third and FINAL Opinion

Bret and I met with Dr. Onc3 (Oncologist #3) this afternoon. Unfortunately, she only had my pathology report and not the Her2 or MRI results. She based her opinion on the information that I supplied her and she said she did agree with Dr. B that surgery and follow up hormonal treatment (tamoxifen) would be the best for me based on the fact I am stage I and the tumor size was 4mm. I had many questions about why I was not a candidate for the Herceptin if I was Her2+ and she explained that just last year the drug was approved for early stage cancer but only for large tumors at least 1 cm. I pushed her for statistics on my risk for recurrence and at first she said 95%....when I asked about the Her2+ factor she said maybe 90%.....there is just not enough info out there today since testing for Her2 is still fairly new. I asked her what "aggressive" really meant in this situation and she said that even though the test shows + which means aggressive I need to remember that the tumor was only 4mm.....okay, so I guess I will never get rid of this little gray area but I can feel better about only a 10% risk of recurrence over a ten year period. She does want to review the final reports that will be sent tomorrow and if she sees something different than what I said she would let me know. This doctor specializes in breast cancer and she seemed very confident in her decision. She answered my very long list of questions and made me feel comfortable with making my decision now.

Right before I went to this appt. Dr. B. called to tell me about the MRI. He said that he presented my case along with the MRI results to the local Tumor Board (a large group of oncologists, surgeons and radiologists) on Friday afternoon. The left breast looks completely clear which was good news. The right breast still shows some areas of concern. He said that they didn't see anything that looked invasive but there are other areas of DCIS which is most likely precancerous areas that will always be suspicious if left. He said that the board recommended that I have a mastectomy. All of the tissue that is removed will again be tested for other areas of invasive cancer. If something serious would show up in pathology we would obviously have to change plans but for right now it is time to think positive thoughts that what is left is just precancerous gunk!

Dr. B. and I spoke late in the afternoon and he said for me to contact Dr. K.s office to start making plans for the surgery. Bret and I both believe that he is the right person to oversee my treatment. I think that because he is young he still wants to learn everything that he can. I believe that my case is somewhat unique and he will always be looking for new information on my type of cancer. I don't think that you find doctors everyday that are willing to call you in the evenings to talk about test results or questions. I really believe that I am blessed to have found
a surgeon and an oncologist that really work with their patients even if that means after office hours!!!

I feel much better about everything that I learned today. I am so thankful that I caught this early and have such a good prognosis....now for my first PSA (public service announcement) All of you wonderful ladies need to make sure that you are doing your self exams and getting your mammograms as recommended. Be sure to tell your doctor about family history of cancer and for those of you with mom's and sister's that have breast cancer (yes, Vicki and Kay - I am talking about you!) there are tests that can be done to see if you carry the breast cancer gene and hormonal treatments available to you if you do! I don't ever want anyone that I love to go through this nightmare - I am encouraged by the new treatments that are being tested but cancer is a horrible disease. I read somewhere that surviving someone actually telling you that you have cancer is the worst part.... and then the recovery starts. All of you have been so supportive and you have helped me move forward in this journey, there were days that I thought I couldn't do it and then one of you would call or send a card or email that helped me just take it one step at time .....THANKS AND LOVE TO ALL!

Friday meeting with the plastic surgeon

Bret and I met with the plastic surgeon on Friday afternoon. She explained the different types of reconstruction surgery that are used after mastectomies. After we did an exam she said that I was not a good candidate for the TRAM flap procedure which is where they use your fat and stomach muscles to build new breasts...she said that too many blood vessels were cut when I had gallbladder and appendix surgery and my C-section. She recommended that I go with implants. On the same day that the breasts would be removed by Dr. K she would follow up immediately with placing expanders (kind of like empty breast implants) under the muscles of the chest. Over a period of time the implants would be expanded with saline until we reached the desired size. Adding the saline would be done during a couple visits to her office. I guess it does cause some pain because you are actually forcing the chest muscles to expand to be able to accept the implants. Once the muscles have been expanded she would then do another surgery to remove the expanders and replace them with the implants. She has performed many of these procedures and felt that I would have no problem if I decided to go this route. She has worked with Dr. K several times and said that he is a good surgeon. She said the first few weeks after the initial surgery are pretty rough and that I should expect to be home at least 6 weeks.

All of this seemed fine to me. She seemed very competent and took time to explain everything and show us pictures of what to expect after surgery.

On Monday afternoon we will meet with a new Oncologist. I feel like I am very prepared for this meeting and I know what questions I will ask about the different drugs that are available and how they work with cancer that is ER+, PR+, HER2+. From what I have researched this is pretty rare. I am confident that we can take care of the cancer that is in the breast. I am more concerned about killing any remaining cells that may be somewhere else in my body which may cause a recurrence. I know that we can not waste our time worrying about tomorrow but the decisions that I make now about my treatment will have a dramatic impact on my chances of beating this for a long time. I am just ready to move on to the next stage of this battle...you all know that I am not the most patient person and the unknown is slowly starting to drive me nuts. I just pray that this new doctor will help me understand everything and that I will be able to make a decision this week.

Coming back to work has been "good medicine" for me. The last two days have gone really well and I am amazed that there are times that I feel really "normal" and can actually forget about cancer for a few minutes. Last week I would have never believed that would have been possible. I have been trying to walk each evening and have even started riding a bike.

A big thank you to all of our dear friends in Georgia for the food from the Schwan Company - everything arrived yesterday so we have a fully stocked freezer of yummy dinners! Your generosity is greatly appreciated - I miss all you guys - I wish I could see each one of you and give you a great big hug!!!

As for appointments I will see a plastic surgeon on Friday afternoon to discuss reconstruction options and then on Monday I will see another Oncologist for her to review my results and propose her treatment plan.

Love to All....Jan

Call back from Dr. B.

Dr. B. and I talked tonight and he cleared up some confusion. Dr. B explained that when we met he did not have the FISH results from the Her2 test and I think he gave me the negative status off of the prelim. info from pathology. He said most importantly that he would not change his proposed treatment plan based on the Her2+ results. He said that he did present my case to his partners and they proposed the same plan. His concerns with what was proposed on Friday by the other Oncologist is that an aggressive treatment plan like that would only change recurrence rates by 1% on the average and his practice does not believe that a 1% improvement is worth the severe side effects that are possible with chemo and Herceptin. He also said that the FDA has not even approved Herceptin for women with node negative status and that is also is only to be used for women with a tumor greater than 1cm, mine was only 4 mm's. He said that the one thing that could change his mind about treatment is an onco dx test - results on this will be back late this week or early next. This is a recurrence risk test. If mine comes back with a high risk for recurrence he said that we should meet and discuss a more intense treatment plan. He asked if I was considering a third opinion and I told him that I was trying to set up more appts. He said he thought that was a good idea and he would like for me to call him back after I get more information. He said we should start some type of treatment within 6 weeks from the surgery and that I should get all the info I can to feel confident in my decision. It was really good to talk to him and now I feel like I am very prepared to meet with the next Oncologist.

I went back to work for a 1/2 day today before going down to Good Sam for the MRI. It was nice to see everyone at the office and they were all so sweet - they had snacks and even restaurant gift certifs. that we can use once I start treatment or have surgery. It was an emotional morning but it makes me feel so good to know that so many people are supporting us through every phase of this journey - God has blessed us with so many wonderful friends! I think back about how hard it was to move three times for my work but I have always known that the positive part of those moves is that I had the chance to meet so many great people in Indiana, Georgia and now Ohio. I thank God every day for our good friends and family!!!

Monday...back to work.

We did hear back from the surgeon and he said that the report did show Her2+. He had a different opinion on what that really meant for me and he was shocked that the Oncologist on Friday would recommend such intensive treatment plan.....now what to do???? I am going to look at getting a third opinion but I plan to call Dr. B and get an explanation from him on how he interpreted the report. I also plan to call the Oncologist back from Friday and let him know that I will not be coming back to him...

Our trip to Crawfordsville was great. It was wonderful to spend time with friends and family that we haven't seen for a while.

Today is my first day back to work. I know it will be hard to focus with all of this going on but I am hoping that once I get back in the swing of things it will make life seem "almost" normal again.