The Schullo’s Personal Blog

As promised I will try and keep everybody posted on how I am doing. I have received some training on entering data but still need help with uploading photos to update our blog gallery. I have a lot of new pictures , but you will have to wait until I get some more training.
First and foremost I want to send along a very heartfelt thank you to all of our families, friends, co-workers as well as anyone that had there lives “touched” by Shauna. For those of you that may not know, Shauna lost her battle with cancer on May 7, 2009. Shauna meant everything to me and my goal from here on out is to make sure that I make her proud of me, for when we meet again. The last month and a half has been the most difficult time of my life. I am making progress, taking one step at a time, trying to stay positive. Shauna would have expected that of me. I am definitely smiling more often with less tears. Today has been a tough day though, I really don’t know why. I had a very good day yesterday, went shopping and found a beautiful desk for the office and it was priced at 50% off. Shauna had told me all about the Wii game so I went and got one of those too! Probably going to need some training on this too!
Shauna was an absolutely amazing woman, and I miss her dearly. My love for her will never die! My plan is to stay in Madison and live in our new home.
I just wanted to let everyone know that I am trying to get the blog updated. I will write more later.
Thanks again for all the love, compassion and support from everyone.

Love, Scott Schullo

Dear family and friends

I have been slow in keeping up with the blog and have not communicated with most anyone since the holidays. So, here is a bit of a catch up to get everyone up to speed.

We moved into our new house on Thursday the 26th of March. It was a whirl wind weekend where Scott worked very hard and I sat around and watched because of very low energy and difficulties breathing. We managed to get everything transferred and Scott got the condo cleaned to perfection in time for the walk through on Tuesday. So, we are officially out of the condo and into the house. Woo Hoo!

On Saturday of this week, a crew from Team Survivor Madison came by to assist Scott and I in getting a bit more settled. They moved and unpacked boxes for 2 hours and it is amazing what they got done. Scott and I really appreciate the extra help and the friendships that have grown from this group of wonderful ladies (and their wonderful men).

On Sunday (last week) my breathing was getting considerably worse and Scott was beginning to worry. So on Monday I went to the ER to have things checked out. They admitted me for pneumonia, but later decided it was a combination of the cancer, some fluid on my lungs and general issues with my health. However, when in the hospital many tests were run and additional cancer was found. I now have cancer in my lungs, my bones and my brain. This leaves us with few options at this point. The chemotherapy is not helping to slow the cancer and is definitely not healing it. So, we will stop chemotherapy for a bit. To slow the stuff in the brain and keep me on a cognitive even keel, they are doing full brain radiation for 10 sessions. This should add a bit of time to what I have left to work with. In addition, they are concerned with my liver function. All the drugs have taken a toll. Maybe a break will help.

The doctor in the hospital was a bit of a doomsayer. She told us that I have only 2 months or so to live. However, others do not agree with her opinion and I am staying with the “we have no idea” perspective. We are currently looking for a miracle though.

I will stay off of treatment for a bit so that I can qualify for any clinical trials that may come up. I have to be off treatment for 4 weeks for most of them. So, we will keep our eye on the science arena and our hearts and prayers in the spiritual arena and see if we can not find a miracle.

Thanks for all the thoughts and prayers. Keep them coming. I do have a bit of difficulty with talking and breathing, so although it is not as personal, email, letters, cards, etc. are probably better than phone calls if you want to get in touch. However, I am still open to the occasional chat with a good friend  If you need our new contact information, please email me shauna at schullo dot com. Take care all! – S&S

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