The Schullo’s Personal Blog

The temperatures have been in the 40’s and 50’s for days - Woo Hoo! The house is about a month from moving in date - Woo Hoo! The Change in chemo is making me feel better - Woo Hoo! Life is good - Woo Hoo!

Ok, so things are looking up this week. Scott and I are doing well and have added quite a few new pictures of the house. The progress is remarkable. Take a look in the Gallery.

Scott is doing his work thing and bowling. I am doing my work thing and resting This weekend we plan to take a bit of time and visit a dinner theater for a 50’s music show. Overall we are on an up and looking forward to many good days. - S&S

Most of the time when I write in the blog it’s to make sure that everyone is up to date and in touch with Scott and I. Occasionally I write just to express myself whether I need to let out some of the good stuff or the bad. This week leaves me with a need to write, so here I am.

It was a beautiful weekend here in Wisconsin. The weather turned warm and we saw temperatures above freezing for the first time in quite a while. The sun was bright and warm. It was a great winter weekend. It made me both happy and sad. I am really happy that I am here to see such a beautiful weekend and sad that I do not have the energy to really enjoy it. So, I am trying to find a way to shake off the blues and snap out of my funk. Life is not long enough to be sad for long.

So, what did we do this weekend? Well, we went out to check on the house. It is really coming along. They say that the granite countertops will go in on the 10th and they will be finishing the wood floors next Thursday and Friday. The bookcase we asked them to make in the greatroom looks great. We have asked the carpenter to give us ideas on how to use those great pieces of eucalyptus wood we have hauled all over from Florida to Alaska and then here. I think we will find a really nice way to use them in this house that will stand out. This past week they have been doing mostly trim work which is turning out very well.

After our visit to the house we did a few errands and that was about the weekend. Tonight we are of course watching the Superbowl even though we are doing it at home and not at a party full of wild friends. We do not really have a team in the game, but Scott would like to see the Cardinals win. So we root for Arizona and watch the commercials. We are also really enjoying the puppy bowl on Animal Plant. It you have not seen it yet, you should check it out! Great laughs.

This week I am going to start a mindfulness meditation class to see if it can help me center my energies toward healing. I am beginning to get a bit down and frustrated because the cancer is not responding to any of the drugs for very long. This week we once again changed protocols. The cancer was getting smaller before Christmas, but now seems to be growing again. The cancer seems to becoming resilient to each drug after just a short time. My Oncologist says that we are not out of options, but the cancer in the lungs is growing and making it more difficult for me to breath without coughing. This is wearing me down. The chemo itself is not so bad, but I am unable to do much without coughing and that is taking a toll. I need to just stay quiet and take it easy, but those of you who know me know that I am going to have a real hard time with that! I need to feel like I am doing something that will make a difference in my own battle and just sitting around does not feel like something worth while!

My Oncologist said she would look over the last few scans and tell me just where we stand. How many steps backwards for how many steps forwards, etc. I wish there were better places for me to find more information, but it is really hard to find anything that makes sense. In addition, the type of BC I have is one of the least studied at the moment, so that makes it difficult as well. The triple negative breast cancer is aggressive and needs more research so that problems like mine can be solved. From what I have read the best approach for TNBC is chemo as it usually reacts well to chemo. However, I have also read about a lot of women who are going through drug protocol after drug protocol like me.

Ok, so enough griping. So far I have lived have seven months with this last bout of cancer and although it has not all been rosy, it has been a good life. I am still not ready to quit, so it is time to put away the gloomy thoughts, pull out the energy building attitude and get myself together again. So hopefully getting this all out here will help me let it all go and I can start fresh with a better attitude in the morning. - Shauna

This weekend Scott and I had a bit of fun with the ladies from TeamSurvivor Madison. One member (Mary) has a team of sled dogs and invited us all out to try her new paddling machine, see the dogs and learn a bit about sled dogs and sledding.

So, Scott and stopped at the new house to see the progress (I am uploading pictures tonight) then headed to Brodhead, a town we had not seen yet. It is southest of Madison about 45 minutes. The drive was nice and Scott and I were able to get a dog fix to keep us going for a while longer. We plan to get new dogs when we move into the house. We also took a quick walk to see a replica covered bridge on a trail next to Mary and Scott (her husband) house. I can not remember the name of the place, but I think we will have to visit again in the spring when it is warmer and I have enough energy to walk the trail.

The house is coming along quite well. They have all flooring except the carpet and all the cabinetry is now in. Most of the doors went in this week as well. We are getting really excited to have a bit of room to move around and also things to do. Winter in the condo when I do not feel up to doing things is drive Scott nuts! He really needs his shop and some projects to keep him busy. Right now all he gets to do is clean house and take care of me which can be a bit overwhelming with no other outlets.

As for me, I am still struggling quite a bit with my lungs. They did some tests last week and have determined that there are no infections or any other reasons that I would continue to cough like I have been except the cancer. So, I hope that we can find a more aggressive approach to getting rid of the cancer in my lungs so I can breath better. It is probably more exhausting than the chemo. I keep thinking that it will pass and then I can start doing things again, but so far it does not look like it is leaving any time soon.

Work is still good and keeps my mind off of my troubles and on more positive things. Scott even had a really good week at work. He has been putting his troubleshooting skills to the test working on some equipment in Viola (2 hours South of Madison). They have solved most of the problems, but he has put in quite a bit of overtime trying to get things straightened out. He enjoys the challenge and even though he had to work a lot of hours, he had a great week.

Now, it is Sunday evening and we are preparing to get back to work. I will be teaching my two classes (USF and UW) and reviewing proposals for the Distance Teaching and Learning Conference this week. That will keep me quite busy. I am also having my port replaced on Wednesday. It stopped working about 2 months ago and they can not get it to work again. So, they will replace it with a power port which can be used for much more than just chemo and blood draws. Although I am not looking forward to the surgery, I am looking forward to not having to use up the veins in my arms. Once they finish putting the port in on Wednesday I will go straight to chemo as I start my 4th round of Abraxane.

Scott will probably have to go back to Viola to fine tune a few more things, but at least it gives him something to do. The weather has been a bit cold, but after being acclimated to cold weather again in Alaska, Wisconsin temps do not seem so bad.

It has been good to hear from many of you and I apologize to those who keep looking for new photos. Try now, there are many to enjoy. Take care and stay warm everyone! - S&S

Classes at USF in Florida started on Monday and my class at UW begins next Monday, so I am going to be staying busy for quite a while. That is fine with me as it is cold outside and the snow is falling so staying indoors does not sound all that bad. It also keeps me stationary and hopefully I will be able to conserve energy for the weekends so Scott and I can go out and have some fun.

The house is moving right along on schedule. They are finishing laying the wood floors today. We plan to go take more pictures this weekend, so stay tuned! I promised to keep up for everyone, but besides the bit I just updated, there is not much different going on. So, I have done my part to let you know what is happening with us, now I expect to hear from all of you about what you are doing lately! Call, email or leave us a comment. We would love to hear from you.

Take care and for our friends in AK, keep warm - S&S

I know it has been quite a while since I updated the blog and many of you have told me I need to keep it up so that you can stop worrying about us. So, here is a quick summation of the year 2008. I promise to do better in 2009.

Our year has been filled with many challenges, changes and lots of people caring about us. It is a great feeling to know that you are loved and missed. The warm thoughts, kind wishes and steady prayers have all been deeply felt. In return we hope that you find your holidays and the coming year be filled with the joy of family, friends and fun.

Being more centrally located here in Madison, we did get a chance to visit with some of you this year and enjoyed a few house guests. Visitors to Madison included Marvin and Shirley Bruggeman, Scott’s nephew Larry, my parents, Scott’s brother Chris and my good friend Amy. We enjoyed time spent with each of them! I took a couple of short trips for work and was able to mix work with the pleasure of visiting with a few friends. Amy met me in Georgia on the beach for a conference and we had a wonderful few days. Amy and I have also spent a few evenings together in Chicago (a short bus ride) where I was able to visit with Larry, Scott’s nephew. In November I went to San Jose to visit my friend Kim and attend a conference. I enjoyed some pampering and time spent with her and the twins. Scott and I also took time to visit his mother in Baxter Minnesota for Mother’s Day and some time spent in Oklahoma with my parents and brother. With all that has been going on in life we find that friends and family are very important to us and hope to get time this coming year to visit with more of you.

We continue to lease a condo on the East side of Madison that is very nice. However, we are in the process of building a house on the West side. It will be completed late February or early March. We look forward to having some room and open space around us. I guess we are just not city people . So, when the house is finished we will have plenty of space for more visitors, so please think about coming to see us.

This is a picture from the bedroom past the dining room. There will be a deck here eventually.

This is just a quick view of the Greatroom after it has been painted. Check out more in the Gallery!

Scott is still working for the local gas and electric company (Madison Gas and Electric). Although he has had some challenges with the different work place, he is happy with the job and loves what he does. Some of the people at the company are feeling a bit out of sorts, making for an uncomfortable working environment at times, but Scott keeps his positive attitude and works hard everyday. Scott is having a bit of trouble with some arthritis in his hip which has encouraged him to not play hockey this year, but he has taken up bowling again. Otherwise he spends much of his time taking care of me as I am unable to do as much as I would like. He is a great help and wonderfully supportive.

My job at the University of Wisconsin-Madison is still going well. We are in the process of moving our small team to another department. We have not yet found a home, so things are a bit unsettled, but otherwise the job is great! One very nice thing is the flexibility to work at home so that I can keep up my energy. I try to make it to the office at least twice a week with Wednesdays spent at the hospital for Chemo and other medical appointments.

I have had some fun this year with a group called Team Survivor Madison (TSM). This group is full of women who have survived cancer and are active and physical. This year I had the privilege of being on their Dragon Boat racing team. This was quite an experience!

On the topic of my health… after thinking we had beaten the cancer and finished all treatments up in February, I was working on getting life back to normal. In April, I got a persistent cough. We thought it was bronchitis, but when it did not go away, I checked with the radiologist. It seemed that I had a bit of radiation pneumonitis, a side effect of radiation treatments. With some x-rays to check out what was happening, suspicious lymph nodes and some small spots in my lungs caused the doctors to do a biopsy. You guessed it, the cancer was back! It is still breast cancer, but now it has metastasized to the lypmph nodes and lungs. So, I am doing Chemo again. At this point we have found a regime that seems to be working. My last CT Scan showed that the cancer is shrinking on average 25%. This is great news as the regime I am on now is the third we have tried since August. If all keeps going well, we will continue to use this regime. Overall, I am still feeling pretty good. I am tired and I cough a lot but
I am still working and living life!

A quick family photo…

Other family news, my brother was diagnosed with multiple Myeloma in July. We went to Oklahoma to visits my parents and my brother and found him in the hospital. He has been battling every since. Luckily he found some really good doctors at the University of Arkansas Multiple Myeloma center in Little Rock. As of last week he was in full remission and ready for next steps. He is still not back on his feet, but he is definitely headed in the right direction.

Here are some more memories from the past year… Enjoy!

Madison is a town with so much to do and so much to see. The surrounding towns all have wonderful events and happenings that we are beginning to explore. There is little reason for someone to be bored if they live here. So, below are some of the many things we have enjoyed and are thankful for this past year. We hope that by reading the words written here you will feel as if you have shared in the wonderful experiences as well. The wonders of life God has given us are the things that get us through all the tough times. So, enjoy.

Music, art, festivals and sun filled days…The Madison area is full of small venues for music, arts and crafts and street festivals of all kinds. This spring, summer and fall Scott and I enjoyed quite a few of these. One was a Blues festival in Sun Prairie. The weather was perfect (in the 70’s) with a light breeze and only a bit of cloud cover. We took our lawn chairs and jackets and headed out for a fun filled day of food, drink and great music. It was a wonderful afternoon! We thoroughly enjoyed the fresh air and music. Wisconsin was just beginning the transition from summer to fall and the weather was stupendous. We also went to the corn festival where we ate as much fresh corn on the cob as we wanted. The Atwood Street Festival (our neighborhood) let us find out more about the small restaurants and other businesses in our neighborhood. We also listened to Blues on the Terrace at the University and shopped at the Mount Horeb festival with Marvin and Shirley to name a few. Participating in the world around us helps to keep our spirits up and gives a positive attitude toward life if you just take the time to look and listen.

Paddling with many friends, enjoying the water and a sense of peace… Have you ever been in a boat with 20 women with a strong desire to live life to the fullest? Well, this is the setting for paddling with TSM. We have been to three races this summer and practiced each week. The water is beautiful, the air is fresh and as we practice on the waters near Madison, there is a sense of peace. To see all that happens with this group you can visit their web site (http://www.teamsurvivormadison.org/). They have been a very good support for me and continue to help even when I do not have the energy to paddle! I have good memories of slowly moving through the waterways of Madison, watching the wildlife and thanking God for the beauty and peace of nature. The races were full of camaraderie and great food as we traveled to Lake Charles, Lake Superior and Oshkosh.

Designing a house that fits our style… Since we determined we were not condo people, we looked around for a house to buy and take advantage of the market. Unfortunately Madison’s market has not been affected quite as much as some other places and we did not find a house that met our needs. They were either too big or the rooms were really small and there was no property included so you were right on top of your neighbors. So, we found some property we really liked and designed a house that fits us perfectly. It will be finished in March. It has been an enjoyable experience with a great contractor. You can keep track of the progress here on the blog, check out the most recent in the gallery on the right.

A beautiful sunset on the beach in Georgia…My trip to Georgia for a conference put me on Jekyl Island. I had a couple of extra days and used them for some relaxation. The sunsets were spectacular, full of reds, golds, pinks and the blue of the water. The shrimp was fresh off the boats, the weather was warm and the flowers in bloom. Life is good!

Watching the snow fall from the warmth of our home….It has been snowing a lot here already. I love winter! The snow is so beautiful. It is however, a bit cold right now. So, I am sitting in the condo looking out as snow flakes fall and collect in the trees and parks. Light reflects off the layers of white as the fireplace warms the room. Many people do not enjoy this season, but I love the way it makes the world look clean and new.

Down time … The voices of friends at the other end of the phone line and unexpected notes and gifts in the mail (even email). These are some of the things that you have time to enjoy when you are forced to slow down. Too bad that it often takes something dramatic to make us stop and enjoy our friends.

Looking back, Scott and I have always tried to take time to enjoy life, nature and the positive things in the world. At times, life has kept us from being completely successful at this. This year has helped us to express our awe with life and to share with friends and family very special times.

Winter is the time when many of us come together with our families and friends in the season of giving. To us, there is always a season of giving. These past few years have shown us how wonderful people are all year round. Thank you to all of the people that are so important in our lives and make such a difference in how we live. S&S