Shooting the Moon

I read an article last week about MD Anderson's Moon Shots Program. 

Instead of putting a man on the moon they are trying dramatically affect the survival rate of different cancers -lung, prostate, melanoma, leukemia (CLL), leukemia (AML, MDS), and breast &ovarian.

When I saw they were targeting breast and ovarian, I assumed they would be focusing on the more common hormone positive breast cancer, instead of the more rare and deadly triple negative. I was wrong they are focusing on triple negative breast cancer. 

While I am glad they are focusing on my specific type of cancer, it is crazy how cancer research gets funded. It is a high stakes game with real lives in play. I know it is not necessarily zero sum, where a dollar on one cancer means a dollar less for another type of cancer. Still medical research is not driven by goodwill. It makes my heart hurt thinking about it.

Tell Me About Yourself

In my son's class the teacher asked the students to fill a bag with different things that tell about yourself. For example, what your hobbies are, what your talents are, and so on. He was also supposed to put in a sudden unpleasant event, so he wrote cancer on a piece of paper and put it in there. 

One aspect that has been difficult in moving is that everyone, or it seemed like everyone in our old town knew about the cancer. Here nobody knows and yet it is still a part of our family's life. When it comes up, like why are you going to Camp Kesem, they explain what they feel like explaining. I can see it wears on them, especially C, (L mainly avoids topics that might lead to cancer) he wants to share, but it was and still is a difficult topic to discuss.

(mhpc.com)

New Onocologist and BRCA1 & BRCA2 & p53 - Now I know my ABCs

I met with my new oncologist at the end of August before school started. She listened to my long medical history, asking questions, and then discussed, while writing down, some options for genetic testing for me. The doctor explained what a positive or negative result of each test would mean for me, for my children, and for my siblings. 

In my medical history monologue, I brought up the expanded BRCA1&2 test. I had read about it at the Siteman Cancer Center site here. I had considered getting the test redone in NV, but it was far, my kids were younger, I was more tired, and so on.

Then she discussed with me P53, aka, the tumor suppressor protein. In looking at my medical history and my family medical history, she thought I might be a viable candidate for a mutation in P53. Which is bad if you tumor suppressor protein is mutated, because then it lets tumors get out of control. 

Before I left I made an appointment with the genetic counselor, though I still think I was just the lucky one to get cancer, and there is no reason to it.

P53 (wikipedia commons)

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.

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.

February and March Expansion Appointments

I continued with my expansion appointments. The pain in my right side took longer and longer between each appointment to go away. My doctor changed locations in the middle of my appointments. The new office is easy to find but a maze once I am in there. The rooms are cold too. This building is a definite upgrade from where they were before, but I miss the old close warm comfy old office.

I am done with expansion appointments! My next surgery is planned for June, and it is not likely that it will be an overnight stay.

The maze of rooms just reminds me that so much of my mental/intellectual ability to cope is based on things staying the same. I do think the chemo fog is lifting. I have epiphanies weekly about items in my life. For some reason my kids are not always as excited about the epiphanies as I am. It is a wonder we survived at all. It is amazing how much we can really do, and how we can adjust, even if we miss the old office.

Doctor Follow Up Appointment

January is a big doctor's appointment month for me. I have the expansion visits and all the follow ups I put off after I had surgery in November. I have two more appointments left this month and then we will move into February. I made many phone calls to try to get my appointments on the same day or at a time that did not interfere with carpool. L heard me making the calls and thought I was too causal on the phone. I told her I had been talking to some of this receptionists for almost 7 years and so we are a little familiar with each other.

L was sick on my appointment day, so my husband took time off to watch the two girls. The visit was fine and so far everything looks good. He did not see any sign that the cancer had returned.

3rd and 4th Expansion

The third expansion bothered me, because I had to wait forever while my kids (who were still out of school) were being watched. There was no emergency the doctor had to attend to, but a lot of patients who yelled and came in whenever they wanted to see the doctor. It was not physically more painful, it just made me weary.

For the fourth expansion my kids were out of school again. I was sick the whole week up to this day, so I was more tired and subdued when I went to the doctor. I cleaned the house ahead of time, because I usually see the doctor on the day we do whole house cleaning. It is uncomfortable to move my arms that much after the expansion.

My doctor said he no longer uses his wheat bag. His kids found it, use it, and will not give it back to him. My nurse is still enjoying hers.

Lymphedema Therapist or It Takes Time

I saw my lymphedema therapist earlier this month, because my hand and arm swelled considerably after the reconstruction surgery. At first I was in so much pain that I did not care. Then I was sick and did not care. Eventually it became a priority. It did not seem like the exercises or MLD or my compression garments were helping.

She was surprised to see me first. Then I told her about the surgery and she understood why I came back. She made minor adjustments to my self MLD(manuel lymph drainage) routine based on my changing body. We talked about my 72 hour kit and she gave me short stretch band aids to replace the ace bandage.

It is always humbling to go to the center where she works, because everyone has much worse physical ailments than I do. My achy swollen hand and arm seem so minor. I do know it can get worse and I have many years for it to get worse, so I want to stay on top of it.

After listening to what I have been doing and checking out my affected limbs, she told me that I am doing the best I can, but that it takes time. She said I could call her if I needed to, but I would not have to see her again until after my next surgery.

A funny thing happened when I signed in. The receptionist was not one that I had seen before. She had me fill out new paperwork. When I asked her a question about something else, she took the opportunity to tell me that I could put my mom or a brother or sister for an Emergency Contact. She explained they needed someone to call if there were problems. As she continued on I realized that she did not think that I was married or even old enough to be married.

Being Understood

I was talking to a lady who is currently undergoing treatments, and someone else came by, saw my Jobst sleeve and glove, and asked if I had carpal tunnel. I told them it was for my swelling and that I had lymphedema. Then they went on their way.

They lady I was sitting next too, said, "They never understand and then they leave because they are uncomfortable." I laughed and said, "Maybe I could of just made something up." Then we continued talking about how incredibly tired chemo can make you.

Later I was thinking about it, and I realized that I expect people to understand about cancer and the treatments and everything else. I try to explain things simply, and hope they will ask questions if they don't. Sometimes the questions are hard to formulate or you might wonder if the person doesn't want to answer again and again, but usually I still ask. When people are going through something I think most know not to take it personally if they do not want to talk to you about it. Every person I have talked to about cancer though is usually glad to talk to someone who knows the terminology already.

It made me sad though that this lady felt that people were uncomfortable talking to her about complicated and confusing cancer concerns. I also thought of the other hard things to talk about beyond cancer and health problems, and I think I could try a little more to be understanding, even if it is difficult to talk about it.

72 Hour Kits

C did a natural disaster project (riptides) in his GT class. The teacher then sent home a prepare for disaster checklist as homework, which I threw away thinking it was another paper from church. C tried to do his homework, and found it missing. I sent a note explaining what happened and stated that he would be glad to share the flag color code system in class instead, and I would put him in charge of updating our 72 hour kits over winter break.

We had not updated them since Baby was born since we were consumed with other things. We left the kits in our front room for a week as we gathered supplies. It reminded me of the last chemo treatment I had when I had cancer the first time and we watched coverage of Hurricane Katrina. It was awful to see, and I especially felt for those who were not in the best of health when it hit. I do not know what my health condition will be if we ever have a disaster like that, so I know I can help now by being the driving force in my family to get the kits ready, and easy for others to use. I can never tell how much assistance I can give in the future, but I can do something right now.

Leaving them in the front room over a week, while not what we initially planned, proved to be very helpful. I know I thought of things that I might not of had we just looked at them, got the supplies and put them back the next day. One thing in particular was we included an ace bandage for my lymphedema affected arm, because looking for my compression garments will not be at the top of my list in an emergency and I only have one pair. Also stress and heavy lifting will most likely cause my arm to swell. Anyway putting that in there made me feel like I will be a little bit more able to assist my family in an emergency.

Post Edit:I replaced the ace bandage with short stretch bandage from my lymphedema therapist.