A good appt. with Dr. B

Today I had a good visit with Dr. B. and I finally feel like I really understand more about my pathology. He was running late when he came in and didn't mind at all when I told him I had 3 PAGES OF QUESTIONS!!! We talked a lot about why the ER/PR numbers were different when run by the company that did the Oncotype test. He spent a great deal of time going thru all the details of the tests and it finally came down to me trying to compare the two when I should not have been...kind of like comparing apples and oranges..the bottom line is that both show ER/PR+ for the tumor and that means that I should take the tamoxifen for five years to improve my chances of remaining cancer free. He gave me the script for the tamox and I will also do a bone density test at the hospital so we have a baseline report...some of these therapies can cause osteoperosis so we will need to monitor that over the next few years. I told him again how I was worried about my Oncotype test score being so high and he told me that approx. 20% of the tests come back in the high category....I had a lot of questions about the way they "graph" their results of risk of recurrence so he pulled out my test and answered all my questions....I finally felt like after six months the confusion was going away!

My MUGA (heart function test) results were back and they actually improved a few points from the last test taken 3 months ago...we talked about if I should continue the Herceptin for the remainder of the 12 months and he agreed that as long as my heart function does not drop we will stay with the standard course of treatment which is 12 months...that was a huge relief...I know there is new data out there showing that 3 months has been effective but when I reviewed those trials I was just not comfortable with the number of patients that participated in the trials or the number of years of follow up...I guess I will let other women be the "test patients" for the shorter course of treatment...

My infusion went fine...I asked him if we could do one benadryl instead of two before the infusion and he said we could try it. I didn't have any adverse reactions and it didn't make me so tired.

I just feel very fortunate to have a doctor that will take so much time with me to keep going over and over some of these things...all this stuff is so very complicated but Dr. B. has a good way of bringing the info down to my level...I felt like today I finally asked the right questions so he could give me the info I was looking for. I do have a unique case when it comes to my pathology and I was trying too hard to make it match up with the "general population" of BC patients and that just can't happen but honestly I am ok with that now. It just feels good to have those nagging worries/questions that were always in the back of my mind cleared up...as we finished up he said again that he really believes that we caught the cancer early and we were aggressive with the treatment because the tests did show that is was an aggressive form and that my chances of EVER having to deal with this again are VERY SMALL! He finished up by saying I better not prove him wrong..."DAMMIT"!! Trust me...I am going to do my best not to prove him wrong!

My antibiotics have finally started helping with the sinus infection..I guess this is one of the worst pollen seasons ever in Cinci so everyone is having problems. I haven't had the energy to walk since Sunday morning but I think I will be able to get back out tomorrow..it is supposed to be warm and sunny. I only had to take a 2 hour nap after treatment this time...got up in time to see Jillian accidentally tear a hole in the arm of my new chair in the living room as she closed the door on the cabinet...UGH!!!

A good quote...

Not sure where I read this but I really like this message.

Search for meaning from your adversity. We can find meaning and hope even in our darkest days. I didn’t ask for this painful experience. But I can choose my response to it. I can choose to grow from it and shape it into a positive force in my life.

I go for my next MUGA tomorrow morning at the hospital. Let's pray that my numbers don't drop or Dr. B. is DEFINITELY going to want to stop the Herceptin...my next treatment is Wednesday so I don't know if he will have the results by then but we certainly have a great deal to discuss!!

Happy Birthday Janie (Tuesday)...you have been so supportive since the day I was diagnosed....I have kept every single card that you have sent in a box that sits right behind my computer screen so I see them all the time...when I re-read the quote above I think of you and what you have taught me since my diagnosis. You have a busy life just like me and everyone else...you run your own business, keep up with the kids, etc...but every week since September you have taken the time to send me a card...sometimes two, with a quick note to let me know that you were thinking of me...that meant so much to me and I will carry that lesson with me into the future and be more supportive to my friends because of you!! Thanks for being such a great friend "and positive force in my life" - love ya!!

Bye-bye Big Toenail...

Yep, the poor big toenail that turned purple back in November when I started chemo fell off today. I knew that the purple color had gone away months ago but the color just didn't look normal...I think that part of the nail actually pulled away from the nail bed because I looked down and the top 3/4 of the nail was just hanging off....Great - just in time for sandal weather!

I have felt horrible today...I am getting a sinus infection and running a fever so I am achey all over....I hate it because the aches and pains remind me so much of chemo. I have some antibiotics and I think they are starting to kick in...other than that I am still just tired but I have been trying to get out and walk as much as possible.

Our weekend was nice. Bret went on the "Dad's fieldtrip" with Jillian to a farm in Kentucky on Friday. That night Heather took Jillian with her family to see Sesame Street Live and she kept her overnight since they go to swim lessons together early on Saturday. Bret took me out on a "date" Friday night....we went down to the river with the Galberg's and had a great evening at Don Pablos...of course Reese made sure we were well taken care of even though he wasn't working that evening! Thanks Reese!!! Other than that I have just been "supervising" some of our outdoor projects that Bret has been working on. Jillian and I packed a picnic lunch today and sat out in the shade of one of the big pine trees in our yard...she was on her best behavior all during our time together but by tonight it was "meltdown central" in our house tonight....I was feeling so bad with my fever that I had to just let Bret handle it....all I know is that it went on for a very long time...that girl is so strong willed...

Happy Birthday to my dear friend Linda on Monday! It was so nice to talk to you today...I loved hearing about you guys participating in the Relay for Life...it sounded very nice. I can't believe you guys are already swimming in your pool - sounds like fun!!

I hope everyone has a good week...

Sights and smells of Spring!

I realized today that I have never really taken the time to appreciate all the sights and smells of spring. I took two walks today...one over to the lake and a second on the trail that led thru the woods. In the morning the lake was so peaceful...the canadian geese were flying in and out of the water while the ducks just swam around in the calm water. I was able to sit on a bench and just relax and take it all in. During my walks I started to notice all the colors...the sky was a beautiful turquoise color with puffy white clouds popping up here and there. The fresh cut was bright green and you could smell that "fresh cut grass smell". Everyone has been putting fresh mulch out and that kind of smells like cow manure (ok, that's not the best smell)! So many different trees are blooming and many of them have fragrant pink, white or red buds. As I was walking thru the neighborhood a breeze started to blow and when I looked down the street it almost looked like it was snowing because tiny white blooms were blowing off the trees that line the streets and filling the air. I stopped right there and just took it all in. As I turned the corner a colorful bluebird flew right beside me and then a vibrant red cardinal flew by on the other side of the street. A few moments later I heard a woodpecker off in the distance. Even the brilliant yellow dandelions looked pretty today. At one point during my walk a big fat bumble bee joined me and even it looked beautiful with it's black and gold stripes. As I returned home I thought to myself that I hope every spring I will take the time to really appreciate the simple beauty that surrounds us every day...it's a gift we too often take for granted.

As I take my walks I feel like I am healing and I am peaceful. Since I was diagnosed in September I have felt like I was running a race and now I have a little time to just breath and focus on healing...I am so thankful for each day that I feel just a little bit stronger.

I hope you get a chance to get out and enjoy spring!

Tuesday update...

Not much new here to report....I am getting ready to go to the dentist for my 6 month cleaning...this morning I was thinking about the last time I had a cleaning...it was the week after I was diagnosed and I had read that you should have your dental work completed before treatment...kind of hard to believe that it has been over 6 months since my diagnosis...it just seems like everything is so different..so many of the silly things I worried about back then don't even cross my mind these days....if nothing else this disease has taught me to focus on what really is important in life. In some book I read the author said "I have never felt so loved" and I would say that I feel that way. All of you have supported our family so much during all of this...there will never be the right words to express how much that really has meant to us.

I haven't been doing much...Bret worked out in the yard over the weekend and started on the landscaping...we have a new bench out front so now I really get to see what is going on in Strawberry Hill!! I warned the neighbors last week that now that I am home I see everyone coming and going...I guess I will be the "neighborhood busy body" for the next week and a half. Tyler and I went out for "coffee" Saturday evening so it was nice to be able to sit with him and talk for a few minutes without being interrupted. Jillian has been quite the "monster" lately..she honestly makes me question every parenting skill I thought that I had...she is just so strong willed and will argue non-stop which I hate because I don't like to argue. My Mom and I joke that I should call Super Nanny but I know if she came here Jillian would act like a perfect angel just to prove me wrong - UGH!!

The weather is supposed to be nice here all week so I am hoping to get out at least twice a day to take short walks....I am hoping that will help with my energy level.

I did hear back about the BART test which was another genetic test..it came back negative so that was good news. Now we just have to wait on the Cowdren's Syndrome (Pumpkin Head) test results which should be a few more weeks.

Did you see that Robin Roberts from Good Morning America took her wig off for good? She has quite a bit more hair than me but I still don't know if I could go out with mine that short....A lot of BC survivors talk about "mullets" and I can see what they mean...my hair is definetely growing in faster in the back and I have NO bangs!! Don't think I would look too good in a mullet so I promise I will get it cut to keep it from looking that way...... when the time comes...????

Love to all!

A Midwest Earthquake???

Well, there was an earthquake this morning but I slept right thru it...On Wed night I didn't get any sleep even though I was very tired so last night I took a prescription sleeping pill (Dr. B. and I decided I should use these instead of Ativan since Ativan can be addicting and sleeping pills are not). I had a good night of sleep and when things started rocking and rolling a little before 6 this morning I peacefully slept right thru it.

I saw the plastic surgeon this morning for a check up. She said that everything looks fine but I won't be getting "pumped up" for a couple more weeks. She wants to make sure everything is totally healed and she said I am healing a little slow most likely due to the chemo. I told her that the most discomfort I have is at the top of my rib cage and she said that is normal...she said once the swelling goes down in the chest it seems to cause some pain on the top ribs in a lot of women. She said I can start sleeping on my side if I can tolerate it. I will see her again three weeks from today.

Not much else to report from this week...since I am still very tired I don't do much. I have taken some short walks in the neighborhood which I hope to start doing every day. The weather has been picture perfect this week so I have spent a lot of time outside. I love sitting in the shade and reading (Kay - I am not reading a cancer book....it is just a silly romance novel)!

I did go to register Jillian for Kindergarten last night...can you believe she will be in Kindergarten this fall??? I left her at home with Bret and when I finished my paperwork I volunteered to take Amanda outside so Heather (our neighbor) could finish up her paperwork. Amanda was playing on the playground with another little girl...both of the attend the same pre-k/daycare as Jillian. I told the other little girl that I was Jillian's Mom and she just kept giving me the strangest look like she didn't believe me...I started to walk away and I heard her say to Amanda...."is that your Grandma?" Well, it's not the first time I have heard that but I think this time I was glad she didn't ask if I was her grandpa...I did just have a baseball cap on my head....LOL - what a self esteem builder...

Hair update: due to the warm weather I had to break down and finally shave my furry legs last night....I could actually feel the hairs blowing in the breeze yesterday when I was outside...I think that was a sign that the time had come!!! Woke up with that old familiar rough stubble on my legs - I hate that! In my crazy mind I think I was a little curious just to see how long the hair on your leg could grow but that "science project" won't happen now!

Have a good weekend!

Weekend update...

Yikes, winter has returned to Ohio. I don't think we had any snow but it was really cold here today...hopefully it will be warmer as we get into the week. I hope all our C'ville friends made it home safe from Florida....wish we could have been there with you - can't wait to hear how much fun you had!! I could really use a trip to the beach right about now....just the idea of walking in the sand along the ocean sounds so good.

I am officially tired of being tired....I think I really did good resting this past week and I was expecting to feel much better by the weekend but I am still tired....I guess doing this type of surgery after chemo was harder on me than I anticipated...I am glad that I waited an extra few weeks after chemo to try to build up some strength...I think that was a good decision and I really did feel good during those weeks and had some good times.

I had a wonderful surprise visitor this weekend. My friend Nancy Cox called me on Saturday from the road. She and her 3 kids were on their way to southern Indiana to visit family so she wanted to see if they could stop for a visit. Nancy and I became friends when we worked together in Crawfordsville and we have not seen each other since 1999...she and her family moved to NY a few years ago but we have kept in touch. They were only here for a very short time but it was SO GREAT to see her and get to know her kids...we really appreciated them stopping by - it made my day!!!! (One of the pics above is from this weekend..the other pic is with my Mom before she left...we miss her!!)

Saturday evening was Strawberry Hill Dinner Club so Bret and I went to that and Tyler babysat Jillian. Speaking of Tyler....he has been a teenager for less than a month and has totally adopted the teenager attitude...I was about to whip his butt yesterday....doesn't want to do chores...doesn't want to babysit...well, Jillian didn't want him as a babysitter either so we left the house on a pleasant note...luckily, she fell asleep about five minutes after we left so it was fine. I can only hope we can make it thru these teenage years...as soon as we are done with him we can just start all over with Jillian....God give us strength!!!

I have decided that staying at home is giving me too much time on the computer. When I met with Dr. B. this last time he mentioned that he was still considering stopping my Herceptin treatments based on a trial done in Finland that women that were treated with Herceptin for 3 months did as well as women that were treated for one year. This was a very small group and since it was in Finland I cannot find anyone on line that has done this. The main concern with Herceptin treatment is that it can cause congestive heart failure so he is basically saying that he doesn't want to take the chance of this happening to me and since I have done so well and my body reacted to the chemo so well that we may just be "overtreating" me. I am not comfortable with stopping mainly because of my Oncotype score (risk of recurrence score) that came back 80 (30% chance of recurrence) out of 100. Thousands of people have taken this test and I cannot find anyone online that has scored higher than a 50. The highest score I have seen behind mine is 53...this is actually a man that lives in Canton, Ohio that was just diagnosed with breast cancer this year. He told me that his oncologist told him he had never seen a score that high and was VERY concerned. I am going to push the issue with Dr. B. when I see him later this month. I want to see if Genentech (the company that conducts this test) will show us a graph or something that shows how people have scored. If I am the person that has the highest score ever than I would think that they would be interested in following my case or doing more testing to see why mine came back so high (most of the scores that I have seen are between 8 and 23). Anyway, this has been my obsession the last few days and it is not good. I pray at night that I can just let this go and know that we have done everything possible to get rid of all the cancer....if there are any other cells floating around I am hoping that eating better and exercising will help my body fight them and keep them from settling somewhere like my liver or brain (where most breast cancers spread). So what am I going to do with my time...I can't seem to focus long enough to read books so I am thinking that I will try to get my kids pictures organized...I used to do a great job when we just had Tyler but now I am 5 years behind and every time I see those albums in the basement it makes me feel bad...Sounds like a good project.

It does seem a little easier as time moves on not to worry constantly about recurrence or dying too young. The last couple weeks have been hard with my online support group. We have had three women in their 30s lose their battle with this horrible disease and it just seems so unfair to see lives cut so short. There was a another woman that posted yesterday that she will probably be going into hospice this week because they have just run out of options to stop her cancer...it was so sad to read her post but she wanted to write something to all of us fighting this disease while she was still able to...she talked about how we all hope that we will see a cure for this in our lifetime but she knows now that this will not happen for her.....I just keep praying that I WILL see one in my lifetime so that people will stop losing their wifes, daughters, mommies, sisters and friends to this rotten disease. Now, I know you all are going to tell me to stop reading this stuff but there is so much positive news out there and good advice and it really has been a comfort to be able to correspond with other women that really do understand what I am feeling or thinking...

I did conquer yet another "fear" this weekend...I was always afraid to go out with a baseball cap on because I have read about so many women being called men or "sir" because you don't see any hair. I finally decided to try it out on Saturday. I took Tyler to the grocery store with me and I told him my "fear" as we walked in...he just rolled his eyes and said any man would be nuts to wear a peach shirt like mine...anyway we made it all thru the busy store and not one person called me "sir" so that was a relief (maybe the bright lipstick helped out a little also)....more options in headwear now - YEAH!

Have a good week and thanks for reading - love to all! (survey at the top being conducted by Bret....not my idea...)

Two weeks since surgery...

It's just been a little over two weeks since surgery...I think I am doing pretty good...the mild pain is now pretty constant...I think it is my chest getting used to two large, hard plastic, foreign objects being in there. It bothers me the most when I lay down or try to sleep....I am so sick of trying to only lay on my back...trying to lay on my side is pretty painful. Kind of reminds me of when you are pregnant you are not supposed to sleep on your back so all you think about it how much you really want to sleep on your back!!!

I have been getting LOTS of rest this week. Monday and Tuesday were beautiful days here so I spent a lot of time sitting out in the backyard trying to catch up on thank you notes and things like that....I even took my hat off and let the sun hit my "almost bald" ghostly white head...it felt good. Of course, we have a chance of snow showers this weekend....gotta love that Midwest weather.

Yesterday I had an appt. with Dr. B and Herceptin treatment. We went over my pathology report from surgery and he told me how pleased he was that there were no signs of DCIS found...DCIS is stage 0 breast cancer...when we did the MRI after my lumpectomy they saw other areas in the "bad boob" that appeared to be DCIS. He said that this is proof that my body responded well to the chemo and he says I am "cured". There really is no cure for breast cancer today but I still love to hear him say that word...you gotta love an optimistic doc! It is great to know that as of right now there are no signs of any cancer in my body. My online support group calls this NED...they will jokingly say I am in love with NED or I love NED....basically short for "no evidence of disease"! I was running a fever of 100.4 when the nurse checked my in so Dr. B was a little concerned about that...my first concern was that my body was rejecting the expanders. He checked everything out and said it looked like I was healing well and all my numbers looked good so he just told me to monitor it and if it went any higher I needed to call him asap to get on antibiotics...I have continued to check it and it has dropped back down to normal. I asked him about hair coloring...I had read that there is some concern about the chemicals in hair coloring being linked to cancer. He said there is still some questions out there so he would prefer that I only use organic treatments....I am not ready to color yet but I will be soon. I showed him my hair and he said "well, that salt and pepper might be nice for you"...I instantly said - "yeah, on men they say salt and pepper is sexy...you never hear anyone say that about women"! After meeting with him I had my treatment and a nice long nap...I woke up long enough just to drive home and hop right back into bed and slept until late in the evening.

Hair update: Hair on my head is definitely coming in salt and pepper...no evidence of red in there. My Mom and Dad both had dark brown/black hair and my oldest sister Vicki also had black hair...she always said Kay and I were adopted...I just can't imagine being anything other than a redhead...need to find some organic hair coloring products! If Sasquatch had a little sister I think it would be me. The hair is growing like crazy all over my body. As fast as the long hairs on my arms fell out recently they are coming back with a vengeance! I still haven't shaved my legs (LAZY)!! The funny thing about that new hair is that it is baby soft so I know that as soon as I shave my legs I will go back to that rough stubble...right now I look like a fifth grade girl that her Mom won't let her shave. I actually bought some new mascara and put some on for the first time in months yesterday!! They are still quite short but at least they are there again! Eyebrows are growing like crazy...I am having to keep them trimmed to avoid the unibrow!! That's it for the hair update!

Weekend update...

We have had a nice weekend. Kay, Dean and Eric came to visit from Vermilion. Kay got me out of the house on Saturday which turned out to be a beautiful day. We spent quite a bit of time out in the backyard and enjoyed the warm sun and some quality time together. Dean was so kind to help Bret with some projects outside, he even worked on our mountain of laundry and took the kids swimming at their hotel. On Saturday evening Bret and Tom H. went to the Hank Williams, Jr./Lynyrd Skynyrd concert....based on the lack of movement out of Bret today I am assuming they really enjoyed themselves! I was happy for him to have a chance to get out and have some fun. Kay took me over to see the Strawberry Hill Bunco Babes before they started playing so it was nice to spend a few minutes catching up with all of them. I really appreciate Kay and her family coming to visit and I was sad to see them leave after picking up Mom today...we will all miss her being here with us.

I have just been tired today...it seems like my sleep has really been messed up lately so I have been trying to stop taking naps but that doesn't seem to be helping. I have also been pretty sore today...just more than usual but nothing horrible, just annoying! It was another beautiful day and Joe and Maria invited us over for dinner so it was nice to catch up with everyone there...they are great neighbors!! Jillian had spent the day with them..she adores Jessica and enjoyed playing with her all day. We really appreciate everyone "getting her out of the house" for us on the weekends. She is loving spending time with all her friends and getting away from her boring, old Mom and Dad!

Kay and I never did get around to crafting ta-ta's this weekend. I found some "push up cleavage pads" that seem to work okay even when you don't really have anything to push up so I will just use those for now.

Friday PS appt.

We saw Dr. K. this morning. She pulled my drains - "OUCH" and I lost my "balls" for good...thank God...I feel so free again!!! She said everything is healing well but we won't be pumping me up any time soon...I guess we have to wait a couple weeks and let the incisions heal up. That bums me out...I hate being flat as a pancake..

After my appt. we needed to pick up some bandages and stuff so I picked up a big sheet of foam and will see if I can make me some little ta-ta's to hold me over until we can start doing fills.

I am feeling good. Just really tired. The pain is still very tolerable. I don't have any constant pain...just sharp, shooting pains every once in a while. I finally took a good look at everything last night....it is pretty horrible to look at but I still do not regret my decision...I know this was the right thing to do but no matter how many pictures I looked at before surgery I still wasn't quite prepared for how bad this surgery really makes you look. It's just so sad that women have to go thru this...hopefully there will be a cure someday...

I am looking forward to Kay and her family coming down for a visit this weekend but not looking forward to them taking Mom home with them...it's been nice to pal around with her...we will all miss her.

Have a good weekend - Jan

Welcome April...Goodbye March!

I don't know about all of you but I am glad to see the end of March!! We are finally getting some warmer temps and sunshine which is so nice to see. My Mom and I sat out on the back porch for a little while this afternoon and it felt so good to be in the sun. I am doing fine...I have learned to shower by myself while at the same time keeping wounds dry...not sure if that really makes Nurse Bret happy or not....I am really looking forward to seeing the PS on Friday morning. I should be getting these two drain tubes out...they really do drive me nuts and they hurt. They are also just gross. They come out of my sides right where my uncomfortable bra strap hits and they drain into two bulbs...Bret calls them my "balls"...he is such a bad boy. I have been stressing my Mom out by making her drive me around in the "big city"! Yesterday we had breakfast at Bob Evans and today I was craving salad from Ruby Tuesday's. Both of these places are probably less than a mile from our house but the traffic around here is a lot different than what she is used to in Vermilion. I just have to get out of the house for a few minutes each day even if it wears me out....I will be glad when I can get out and start walking each day so I can get stronger.

It has been really nice to have my Mom here. We just sit around and talk when I am not napping and both the kids enjoy having her here.

Thanks again to all of you for the thoughtful cards, flowers, gifts and email/blog messages....they always lift my spirits!