MD Anderson and Dr Kovitz

Thursday afternoon Erik and I checked into registration at MD Anderson in The Woodlands and were greeted by my coworker's lovely daughter, which we quickly figured out during our visit. LaToya was so sweet explaining the forms and having me sign in. After finding out we would be seeing a different doctor than originally planned, we had about an hour or so to check out the St. Luke's gift shop. MDA in The Woodlands is located on the St. Luke's campus. When we returned to the waiting area my friend Megan arrived. She came along to be an extra set of ears for me and to take notes. I had already met with her earlier in the week to come up with a question list for the lucky doctor to answer. The nurse took me back and got my history from 2014 to current day typed up in the notes, my allergies, pharmacies, medications...business stuff. Then the social worker, Suki, came in and talked to me about their services and support groups for my family. She gave me information and they forms for advanced directives and living wills. Then came the physician assistant Tracy. She did my exam and asked me more questions just to get up to speed so she could fill in the doctor. When Dr. Kovitz came in, he instantly started addressing my list of questions. He needed more information like a CT of the liver specifically and he wanted to check labs again, making sure my counts weren't too low to start the Ibrance that evening. He said when I get my labs drawn they see the results within an hour! When I left there I felt we had a plan and not a wait and see approach either. I don't have time to waste on waiting plus I'm just not very patient and waiting makes my anxiety and insomnia worse. So I went to get labs and within 20 min or less Tracy the PA called to tell me to wait on restarting the ibrance for another week because my neutrophils were 0.72, and that is too low. This was reassuring to me that the doctor and PA were looking that closely at things such as neutrophils! I scheduled my CT scan and they offered me three locations to pick from at basically whatever time I needed due to my work schedule. I only have to fast for four hours and I get to drink the nasty contrast right there and not at home. My next scan will be Sept. 28 along with labs. I then will meet Dr Kovitz on Oct. 2nd for results. He said he was bringing my case to the breast cancer tumor board where multiple doctors from all different specialties meet to review my case and develop a safe plan of care. Lots of brains in the mix! I can't wait to hear what they decide is best for me. I learned that following a special diet isn't recommended and most are just a hoax. I can still drink Diet Coke and eat sugar in moderation. Just following a healthy diet is recommended by the dietician which they have for me to meet with if I choose to. I learned that in breast cancer patients CT scans are better than Pet scans. Not sure why but my insurance will like that. More affordable. I learned I will have CT Scans most likely every three months. If it's in the liver they most likely won't be able to do the intensive radiation but if it's not then in a few more rounds of ibrance we might do it to try to shrink the tumor on the spine. We still may need to biopsy the liver spot if they believe it's mets and it's not too small. I was filled with information Thursday but more importantly filled with hope and the energy to fight. I want aggressive treatment and not just a wait and see approach. I want my doctor to have a team behind him in all different specialties available to me with just a phone call or email. I want to know the answers before I think of the questions and I want honesty. I felt so good after walking out of that building and driving off the campus that day. Megan and Erik felt it too. Makes me sad to close the chapter of the book with Millineum Physicians and the team I've had up until this decision was made to transfer care but the game has changed and I need a new set of eyes and a new "quarterback" so to say to help me win the game! 

PET scan results and next steps

Went to the oncologist last week and got my labs and my scan results back. My Ibrance has caused my white count to go down to below normal at 2.2 after the first month and platelets 118. My CEA level is over 7. But what concerns everyone is the Pet scan showed a suspicious area measuring 1.3 cm in the right lobe of the liver. They aren't calling it a lesion but they do say it is suspicious for metastatic cancer. I was totally defeated! Another area of mets to worry about! So that sort of pushed me to making the patient referral to MD Anderson Cancer Center in The Woodlands location. I need a second opinion to make sure I'm getting the answers I need to hear before I can even think of the questions. I need more aggressive treatments I feel due to the fact if this is cancer my time is precious to me and I need a bigger medical army to help me fight. MDA specializes only in cancer and they might have clinical trials I haven't no idea about. Maybe they will say I'm on the right path and that's ok too. I just don't want to go down without ever having consulted the big dogs. Erik will take a half day and I may see if my friend Megan can come since she's a nurse and has been through this with her mom just a few years ago. We need someone who isn't as emotional tied to this to think of questions for and with us. 

Hugging

People are hugging me a lot more these days and I noticed they hold on longer and squeeze tighter. Now I'm all one for a good hug. They say you need 7 a day. But it's upsetting when I know the reason people are hugging for so long. It's because they are feeling sorry for me I think and I don't like that. People treat me like I have a death sentence when they hear about my cancer returning. In fact I had a nurse tonight talk to me because she was a hospice nurse in the past and she wanted to tell me if I had questions I could come to her. Super nice but I'm sooooo not there! I know people want to plan a meeting with me or even better a trip to meet. Now I love that but not if it's because they think I'm dying soon...I'm not. I'm still doing what I do. Work, family, housework, etc. I'm still just a regular mom who happens to have stage four cancer. I may be in denial how this works, I don't know. But for now please hug me because you love me and just want a quick hug. Not because you want to mourn over me before it's time. 

Bucket List and my thoughts

So I can't sleep. This is nothing new these days now that I'm officially in menopause. I have been searching Pinterest for bucket list ideas and ya know what? I realized I have done a lot of things in my life that I wanted to do. Have a baby. Get married. Send a child to college. Goto the Bahamas. Have a best friend. Rescue a dog. Have my dream job. Visit Vegas. Those are just a few. I have more that I would like to do. And everything involves money. Sometimes the little things are the biggest on your bucket list when faced to make one. Will I ever meet my celebrity crush? Not likely. Will I ever have wine and pasta in Italy? Maybe but I doubt it. I want the little things to matter most. Take each of my kids on a weekend get away alone. Write a letter to myself to be opened 10 years from now. Keep this blog up for my children. Scrapbook more. Take more photos of myself and be proud of how I look, scars and all. It's the little things that they will remember. It won't matter if I see the tulips in Holland because I've seen them in Orange City, Iowa. It won't matter if I don't make it to Bora Bora because I've seen waters blue as blue can be and sand as white and soft as snow. I'm realizing my list is just a list and maybe I need to be more realistic and do things now that make memories here, right here where I am now.