August update--back to original plan and learning new things about my cancer

Cancer update:

On Tuesday I had a monthly follow-up appointment with my oncologist and some bloodwork.  I had been off of Verzenio since a little before our California trip and they said not to resume until my meeting with my local oncologist.  I brought all my questions as follow-up from the City of Hope in California visit.  Here are the questions I had and my oncologist's responses:

• The number one thing the oncologist in California wanted me to do is get a hematologic evaluation.  He said I needed this to find out why my white blood counts plummet any time I take harsh cancer drugs. In 2012 I had to stop chemo after 2 of the 4 treatments due to my body not being able to handle the treatment (again, I look at this as a blessing based on what I know now).  With Verzenio, my white blood count and neutrophils tanks after just two pills spread days apart.  My local oncologist, Dr. H., replied that everyone metabolizes drugs differently.  For me, maybe the lower dosage is just fine.  Maybe my body metabolizes the drug quickly and I have a lot of excess, which cause the terrible side effects on my immune system.  She doesn't feel that having the blood analysis will tell us anything.  After all, I had a bone marrow biopsy in 2014 and it didn't tell us anything regarding that.  And off of Verzenio, my blood is pretty normal (my white counts have always been low since chemo--probably due to chemo, but my neutrophil count is in normal range off of Verzenio). She said any treatment for issues like I have with my counts dropping involve taking massive doses of steroids (which this is actually what the City of Hope doctor mentioned). Dr. H said obviously we don't want to do that, because that lowers my immune system and leaves me open for all sorts of illnesses. So, the plan now is to go back on Verzenio at a low dose (50 mg, twice a day).  
• The 2nd thing the City of Hope (COH) doctor said I needed was an MRI of my liver and bones.  He said I needed a baseline so I know more details on the extent of my cancer.  Dr. H actually disagreed with this.  She said, first, it's hard to do an MRI of your whole body, which is what would be needed since the cancer is in my bones from my neck to my toes.  Second, the PET actually shows more detail of the cancer in the bones than an MRI would.  If she would do anything, it would be an X-ray on an area of concern where I was having pain.  And for the liver, she doesn't want to do an MRI unless I start having issues with my liver.  She said that none of these imaging studies would change my treatment.  I told her that the COH doctor didn't want me to even jump until I knew more details on the cancer in my bones, for fear of fracture.  Dr. H was fine with me doing whatever workouts I wanted, paying attention to any pain I have (and obviously avoiding exercises that cause pain.
• I asked Dr. H about measuring my cell free DNA.  She said there is a slow turn around time of that of 3-4 weeks.  Plus, I actually had a liquid biopsy in June and it showed a do not have a lot of circulating tumor cells in my blood.  (I look at that as a really good thing!)
• And on that subject, I mentioned to Dr. H that the COH doctor said my cancer had a very low proliferation rate.  This means it is slow growing.  It also makes it difficult to track.  I asked Dr. H how long she thinks my cancer has been there.  Her response was that it's been growing since 2012.  My last PET scan was February 2013. :-)  That is why it is so important for me to stay on track with my diet, exercise, supplementation for deficiencies, manage stress, etc.  Cancer is quiet.....until it's not.  
  
• I asked her about my tumor markers.  In July, one marker went slightly up and one slightly down.  She said she expects these to be very slow changing.  If my cancer is slow growing, it will likely, in her opinion, be slowly responding.  My blood test from Tuesday (I just got the results this morning) show both of my markers going down even more.  Nothing drastic, but they are moving in the right direction. CA 15-3 went from to 88.1 to 87.6 and my CA 27-29 went from 97.9 to 94 (in June it was 103.4 and in 9/2012 it was 34.1 for reference).

So now, I am still focusing on prayer, nutrition, working out, de-stressing, self-care, and supplementation, and alternative treatments to kill this cancer.  We are going about normal life otherwise.  I will say, doing all that I am trying to do is very difficult--finding time for it all while also doing all of our activities, homeschooling and planning for the groups I lead, and doing just normal daily life like grocery shopping, laundry, figuring out meal plans, etc. But I have to be focused on healing this--BELIEVING GOD is healing me, while also putting in the work I need to put in. 

Fun (non-cancer) Stuff:

As kids are headed "back to school" I love seeing all the kids' photos each year. It's such an exciting time for everyone! We homeschool year-round (except our summer schedule is much lighter and we don't have our usual activities, so it is nice and laid back.) But, our activities are starting back up and the kids are excited. I like to document once a year what our kids are up to in school and activities, for memories sake. I lost count of what year of homeschooling it is for us, but we started from the very beginning.

 

Luke is 12 years old (almost 13). Based on his age, he would be a 7th grader in traditional school. Luke loves engineering and making things (he still enjoys legos), is fascinated with computers and entrepreneurship, loves playing sports (his favorites are basketball and football) and being active outdoors, and enjoys music and playing piano. His favorite subject is math. Being a 7th grader, he is starting attending all of the youth group things at church and he is so excited about it.  We love watching his friendships at church grow as well as his love for the Lord.  It's an exciting time.

 

 

 

Abbey is 10 years old. She would be in 5th grade based on her age in traditional school. Abbey enjoys arts and crafts and being creative by making stop motion movies with her stuffed animals and American Girl dolls. She loves singing, playing piano and musical theater. She also enjoys nature and playing basketball. Her favorite subject is also math. 

 

 

Our curriculum this year includes the following: Life of Fred Math (Advanced Algebra and Geometry), Story of the World Volume 3 for History with a group of friends, Zoology 2 (swimming creatures) with our science group, IEW Bible Based Writing Lessons, IEW Fix-It Grammar, Theater Class at ODA (Abbey), Engineering Class (Luke), Software Coding (with different books and programs), Spanish. We may also add in some fun Texas History with trips to the Bullock Museum. The kids plan on joining the Austin Royals (homeschool basketball organization) for basketball this year , and the kids also continue their piano lessons. We are exciting about another great school year!

Prayer Requests:

• That I figure out how to manage everything I need to do in order to kill this cancer.  There are so many "to dos" every day between supplements taken at different times all throughout the day, medications, juicing, eating enough, working out, getting my alternative treatments in, meditation, sitting in the sunshine, meal-planning, cooking the meals I have planned---in addition to regular daily activities.  I don't want all the things I am trying to do to kill my cancer to cause me stress--I'm supposed to be reducing my stress.
• That the cancer continues to die!
• There are a couple of supplements that may interfere with Verzenio.  I have gotten conflicting information on whether it is okay to take those.  I need prayers for direction on this, because these are supplements that I have read a lot about that I know do good things for me.
• I have been having some hip pain.  I would love prayers that I figure out if it's something I need to follow up on.
• And lastly, that I don't have negative side effects from the treatment that I am on.