The Schullo’s Personal Blog

We have broken ground on the house and it is going quickly. I thought I would add some pictures to the gallery so that you can see them. Just click on the gallery link on the right and look at the House on Timberlane album. Here is just a couple to get you started.

I will write more later this weekend if time allows. - SJS

How can anyone be depressed when days are as beautiful as those we have been having in Madison this week. I had a long day today, starting in the office with multiple meetings and things to get done, but I carved out some time (walking to and from meetings) to enjoy the wonderful Summer/Fall weather. I sat in the sunshine and ate lunch looking out over lake Mendota. Sailboats were on the water and the temperature was just perfect. This type of day always lifts my spirits. When I left campus a few minute ago, the sun was setting and it was all so picturesque. God has provided some great materials for making me feel better today.

One of the things that I did today was participate in a function for students on campus in one of the residential halls. This hall has a residential learning community program that helps students become part of the University with many different events and programs. Tonight was a dinner for a common read project. Everyone (students, staff and faculty) involved read the book “the Tortilla Curtain” by T. C. Boyle. Then we discussed it over dinner in the resident hall.

It was an interesting book with many things one could discuss with a group of young students. Our table was full of young women and quite interesting. Everyone that sat at the table besides me was a Wisconsin Native. Two other staff (both men) also participated at this table and it was a very good mix. The students were at different levels in their schooling and also their interests. The conversation was stimulating and I feel that I had a chance to work with the young people on campus which I most often do not get to do. It was quite rewarding!

Now, at the end of a long day with thoughts of all the different issues we discussed going through my head, I come to a conclusion I have been getting to quite often. We are very lucky in this country to have what we do. However, we often only look a the materialistic things in our lives and forget to stay in touch with what matters even more. Our friends, our families and our loved ones. Tonight I started on a path to making new friends and I greatly appreciate my friends who have stuck with me all these years. I also greatly appreciate my family. In fact, I find I am much closer to them now than I have ever been and I am very glad that I have had the opportunity to get there.

Overall, it was a wonderful day and I am in high spirits. I plan to stay this way as much as possible. In fact, Scott and I are taking a bit of a road trip this weekend. We are going to Oshkosh (about 1.5 hours) to watch TeamSurvivor race in the Dragon Boat races there. I have taken myself off the roster because of my cough and my energy levels being a bit low, but I am still going to watch and support. It should be an absolutely gorgeous weekend for it. We will be back Saturday night, but just to get away and enjoy the out doors for a while will be a wonderful reward for both of us.

Well, off to rest. I hope that all of you are taking the time to enjoy the life around you. Do not wait to do this. Take advantage of what you have now and enjoy each day to its fullest. Life will never be long enough for any of us to accomplish all we want to do, so make sure that what you do get done is worth doing. Take time to smell the flowers and share them with others. The rest will all work itself out!

- S&S

After posting such a depressing and long message about the issues I am facing with my health I thought I would liven it up a bit with some stories of how we are staying busy and up beat through all this.

Last weekend was a beautiful weekend! The weather was perfect (in the 70’s) with a light breeze and only a bit of cloud cover. The skies were blue and we decided to go to Sun Prairie for the Blues Festival.

We took our lawn chairs and jackets and headed out for a wonderful afternoon of food, drink and great music. It was a wonderful afternoon! We thoroughly enjoyed the fresh air and music. Wisconsin is just beginning the transition from summer to fall and the weather has been stupendous. This past week it has been raining a bit, but it is still quite nice. Today is a bit drab and rainy, but I think most of the country is in that state today thanks to Ike.

Even though it is raining we are considering checking out the Monroe Street Festival. Monroe street is a neat little area here in Madison that I have wanted to investigate for quite a while and have not taken the time. We will see if we brave the weather or if it happens to break up so we can enjoy a bit of walking and browsing in a part of town we do not know yet. Of course Scott would also like to go to Mount Horeb for the Thirsty Troll Beer Fest. We will see where we end up, but even if it is snug in the condo watching movies, we will be doing it with happy hearts, knowing that life is good and we should enjoy every minute.

I find that the world around me helps to keep my spirits up and gives a positive attitude toward life if you just take the time to look and listen. Even though things are a bit grim right now, I still have a strong belief that God does not give us more than we can handle. Scott and I are handling things and doing our best not to dwell on the negative aspects. We are continuing on plans to build our house and hope to break ground on the 22nd of this month! Hurray!

I sincerely hope you are all taking the time to enjoy life! Thanks for the thoughts and prayers. You are all in ours as well. -S&S

I April of 2007 I was diagnosed (dx) with Adenocarcinoma or Invasive (infiltrating) Ductal Carcinoma (DCIS). My breast cancer was of the triple negative (TNBC) variety meaning that it was not positive for receptors of progesterone, estrogen and Her2Nu. The tumor was large and aggressive. It seemed to be attaching (pulling on) to the chest muscle. So, it was preliminarily staged at IIIA. They were not sure about how the nodes were affected, but are concerned about the aggressiveness, the size (over 5 cm considered a T3), the triple negative and the involvement with the chest muscle.

Treatment (tx) for this cancer included 6 months of neoadjuvant chemo therapy from April to October 2007. 3 months of weekly ACT followed by 3 months of Taxotere. Then, shortly after chemo was over I had a mastectomy (November 2007) followed by 8 weeks of daily radiation treatments (January-February 2008). It looked to be a clean bill of health and March 2008 was a month for celebration! I had my port removed thinking I would not need it anymore. I had a mammogram in April 2008 and things looked good.

In May I visited my regular doctor because I was having bronchitis type symptoms. I was coughing a lot. He told me it was probably just bronchitis and it would go away. When it did not go away, I started investigating and thought I might have Radiation Pneumonitis. I went back to my regular doctor and after messing around for a few visits and starting steroids, he did some chest x-rays. By this time I decided to go to one of my cancer doctors. My oncologist (Dr. P) was on maternity leave, so I went to see my radiologist who is very good. He agreed that I probably had pneumonitis in some small areas of my lungs. I also showed him a spot on my stomach that looked somewhat like a boil that had popped up over the last month or two. After looking at the chest x-rays, he was a bit suspicious of some of the lymph nodes around my airways, so we did a PET scan. Sure enough I lit up. There were spots in the lymphs and in the lungs. So it was biopsy time!

I had the biopsy on August 1st, 2008. The biopsy was not enough to tell if the cancer is still the exact same type, but it is breast cancer and they are assuming that it is still triple negative adenocarcinoma. So here we go again.

At this time I am not sure what stage this is, but since it has metastasized, I would assume it is Stage IV. Once again a good place to learn more about this if you are interested is the American Cancer Society web site. Tipple negative type Breast Cancer is a more aggressive type than those that have positive receptors.

This time it is a recurrence and I think they would not call this a “localized recurrence” as it has spread to the lymph system (near the lungs and airways as well as probably under my right arm) and to some small extent the lungs. So this is called metastatic cancer and will be much harder to fight. I do feel that we caught it early and I am lucky as it is still small spots of cancer and not a massive amount.

I got a new Oncologist based on recommendations from my Oncologist (Dr. P) via email from her maternity leave. I think he will be good for me as he seems to take the time to talk with me and help me to understand things. Here is a bit of what he told me. I have metastatic breast cancer, meaning it has spread from the breast to other parts of the body. At this time it is confined to my chest area, my lymph nodes around the lungs and about 3-4 small cancerous nodules within my lungs. The plan of attack is chemo therapy with a different set of drugs (CMF) than we used during the first go round. As many of you probably know, Metastatic breast cancer is not curable. Best case scenario, they can put me into remission and I will need to be monitored for my whole life. When it comes back, I will go through the whole thing again. Worst case scenario, the chemo does not work and the cancer continues to grow and spread. Then they have to try different things to see if they can stop it. Let’s hope for the best case scenario. I also went back in to have my infusion port put back into my chest on August 26th. This should make things easier, but damn, I just got it out in March!

So, with Dr. H, I started Chemo on August 15th with the CMF protocol. I was supposed to get it every 3 weeks for 6 months. After the first 3 weeks it was determined that is was probably not working as the tumor on my stomach had gotten a bit bigger, redder and was now causing me some pain as well as some pain in the area under my right arm (the side where they took my breast). So, on September 5th, we changed protocols. I am now on Gemcitabine (Genzar) (1960 mg) and Carboplatin (CBDCA) (650 mg). I get both on the first week and then 8 days later get the Germcitabine again. Then IO get a week off and start the cycle again. These are all intravenous, so chemo last about an hour, not too bad.

At this time Dr. H decided to get another base line CT scan to see where things stand. Today (September 12th) is the 8 day chemo day so I got my Germcitabine and talked to the Nurse practitioner about my CT scan from Tuesday. I now have a copy of the results of that scan and it looks like we guessed correctly. The cancer has grown a bit, although it is only a small amount and in some place it may have actually shrunk or made no change. So I do not think it is time to panic just yet!

I do feel like this new treatment is working better than the last as the tumor on the outside is not as red and does not hurt like it did two weeks ago. So, this may be a positive sign. We will just have to wait and see. As for now, I am handling the chemo well. I am working full time and teaching two classes online, so I guess I am holding up.

Thanks to everyone for all the thoughts and prayers. They all help to heal the soul and encourage the body to follow along!

For those of you looking for additional information about all this, here are some links that may help. I am also collecting some of them here for me that I thought were particularly interesting and I want to go back and take some time with.

Good descriptions and some breast cancer lingo that will help you decipher some of the other sites: http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Stubborn_Form_of_Breast_Cancer_Linked_to_Age_Race_Ethnicity.asp

A site specifically for TNBC: http://www.tnbcfoundation.org/index.html

This is an interesting article and quick video from CNN that has some information: http://www.cnn.com/2008/HEALTH/conditions/06/16/hm.triple.neg.breast.cancer/index.html

This is a pretty good article from DR. Susan Love on TNBC: http://www.dslrf.org/breastcancer/content.asp?L2=6&L3=5&SID=381

ABC News has a site about Breast Cancer. I especially liked the Girlfriend section:
http://abcnews.go.com/Health/OnCallPlus/

As the summer is starting to come to a close, we have been enjoying the outdoors quite a bit. As I already wrote, the Dragonboat racing at Lake Superior was a blast. I am uploading some pictures to the gallery today so you can see, check under the Dragon Boat Racing Album for more, but this one shows us racing, and we are not the last boat!

This past weekend we volunteered at the Chocolate Chase Ride, a fund raiser for TEAMSurvivor Madison. It was fun even though Scott had hurt his back earlier and was in some real pain. He still came along, the Trooper that he is. For more pictures of the ride, check out: http://trekstoremadison.com/page.cfm?PageID=388. There is also an article about the Chocolate chase in the Capitol Times if you want to learn more. http://www.madison.com/tct/news/stories/302834

On Sunday we went to the Taste of Madison which was held around Capitol Square. This is the same place they hold the Farmers Market for those of you who have been there. It was a lot of food and fun. The temperatures were a bit high, so finding shade to eat in was definitely a must.

Here is a picture that comes from the gallery with the article linked above for those of you who do not understand what “Capitol Square” looks like. You may want to check out the other 25 pics. I found some of them very interesting!

Well, this weekend will probably be a quiet one as Friday is Chemo day, but I will be damned if I let this thing slow me down too much! Hope all of you are enjoying the last few days of summer. Fall is soon approaching and although I love Fall, I will also miss summer. Take care all! - S&S