Tuesday, August 21, 2012

Blood pressure and other adventures

I went to the doctor a few weeks ago and he said to email him if I had any questions. So I talked and researched and talked some more to my husband and family about the next step for in reconstruction. C assured me that staying in the hospital longer would be fine, they are getting used to it, and eventually they will be okay if I stay there all the time. I appreciate that he was trying to be encouraging, but I told him we are trying to get to less hospital stays not more. L said I could pay her and she would cook dinner the whole time. After talking and researching I emailed some questions to the doctor and then based on those answers I emailed a few more.

Then the doctor's secretary called me and said she was scheduling another appointment to go over the questions. I told her what we had decided to do surgery wise, barring any complications. We tentatively scheduled a latissimus dorsi flap on the right side for right after Christmas.

Even after that decision I still went to my question appointment. My paperwork seems to like to hide.  They wanted me to fill out the first time paperwork again, and they still did not have my records from my old doctor. I have called my old doctor, they have called, and after this appointment I called again. After I fought the power of paperwork, they took me back. My blood pressure in my left arm was 96/70 and then again 96/70 and then the nurse was a little worried and she got another nurse to double check my blood pressure. This time it was 104/70. I usually have low blood pressure. They made note on my chart now. One of my dear cousins also had low blood pressure, and probably others in my family as well. When she was pregnant with her first child her blood pressure went up, but was still in the normal range, but high for her. Then it went higher and she had to have the baby early and all that fun stuff. I just remember her complaining about them not taking her seriously when her blood pressure went from low to normal.

Many of my questions related to how my surgery will affect my family, lifting restrictions, hospital stay length, and so on. The great thing was when I asked those questions, the doctor answered them in how they relate to my family, because he remembered (checked my chart at least) I had kids and could see how things affecting me, affected my family.

I did not realize that school started and was unprepared for the crazy traffic on the way to the appointment. To get to the cancer institute you have to drive past many of the University of Utah's buildings. I was very grateful for the parking garage and patient parking permit

Camp Kesem Yay!

L and C enjoyed Camp Kesem again. Baby enjoyed a week without competing for her mother's attention. They have theme days - pirate, Harry Potter, Superhero, and wild west. Both of them had fun choosing items to wear on those days. The good thing about having a mom who wore many scarves is that there are so many options for days like pirate, or wild west.

It sounded happier and rowdier this year. The stories L and C told sounded like insane fun chaos. Both of them liked the cabin chats(end of the day talks about your feelings) better this year. They thought they were much less depressing. Besides the talent show, ropes course, basketball, swimming, fishing, night time steal the flag, crafts and other fun activities they have an empowerment ceremony. All the campers and counselors get together and cry, I mean the kids have an opportunity to share what is in their hearts, and own their stories. Not surprisingly the focus is usually on how cancer has affected their lives through the death or illness of one of their primary caregivers.The wonderful thing is they are explaining how they feel to others who understand, who they don't have to explain the cancer shorthand to. 

I miss them while they are gone. It is rejuvenating for them to go and be among the amazing volunteer counselors and other kids. It is also good for that time to be set aside to focus on the cancer feelings. I think it makes it easier to deal with at other times.

Monday, August 13, 2012

I was just eating breakfast with my kids

At the school my children used to attend, they had a Moms and Muffins breakfast. I was sitting with C and Baby talking with friends when a teacher came over to talk to me. She is not a teacher my kids have had, though I had heard she was an excellent teacher. She came over to thank me for all the help I had given her. Since I had barely stepped foot in the school last year, let alone help this teacher, I thought she was mistaken. I told her I was sorry, she must of thought I was someone else.

She was not mistaken, she knew who I was, and she said that many of the people who had helped her (she had breast cancer treatment) had told her they talked to me first (I remember some of them) about what to do to help her. I was humbled that she would thank me for that, especially because I felt it was so little, and I knew many others who had done so much. We talked about treatment and prognosis and all the other stuff in our shared language of cancer shorthand.

Life surprises me.

New Doctors

We moved, which meant I did not have my final reconstruction surgery in June. Changing doctors is time consuming. My old oncologist gave a recommendation for my new oncologist and cancer center which was good. It was funny to me when my new cancer care coordinator kept trying to figure out which cancer center I used before. Instead I had let her know I was my own cancer care coordinator and I used whichever doctors/office staff I felt the best about.  I gave them names and telephone numbers. Then the care coordinator had her baby early and I had to start all over again with a new coordinator. I finally got appointments with the plastic surgeon and oncologist. When I went to my first appointment, he did not have any of my previous information. What?! Those 25 phone calls where I was trying to keep Baby quiet and L and C from fighting and still my medical history did not make it to my doctors. On the way out I gave them the business cards from my doctors, so they could try again.

I felt good about the appointment, though there were a few unexpected complications. My next surgery will be a multiple day hospital stay and multiple week recovery. Even typing that reminds me how much I wish the surgeries were over.