Thursday, August 30, 2012

Cut, Poison Burn

So after my diagnosis, I immediately started my own research via books, others with cancer, and the internet.  I want to feel like I know what the best options are, and if they are available for me.  It is amazing how much information is out there and yet surprising that with all of that information, the treatment of Breast Cancer is roughly the same as it was 20 or 30 years ago: Cut, Poison and Burn.  The cut refers to the surgery, either mastectomy or lumpectomy depending on how much tissue is involved.  Poison refers to chemotherapy, and Burn is for radiation.  At the time of my diagnosis and for the month until surgery, I knew that surgery was definitely in my future, but the prescription for chemo and or radiation doesn't isn't definitive until after surgery when the Doctors can tell how far the cancer has spread.  While I didn't know yet what would be prescribed for me, I wanted to know all I could learn about the treatments before surgery.

It seemed an obvious choice to travel to Salt Lake City to the Huntsman Cancer Institute to get a second opinion, especially since we live just an hour and a half away.  What a beautiful and welcoming place they have there.  I was impressed by the compassion shown by the nurses especially.  The program there is very efficient and well run.  My diagnosis was confirmed by the Surgeon there as well as the recommended surgery; a full mastectomy.  After the trip down to Salt Lake, I decided to stay close to home for surgery and felt confident in the abilities of the surgeon here.

It sounds crazy but with continued research, what did not seem an obvious choice was to accept chemotherapy treatments if they were recommended.  I read one study that found that chemo is least effective for women in my particular demographic: under 40, hormone positive, and HER2 negative. There are so many complications, side effects, and long term health compromises associated with chemotherapy that I felt very concerned about how it would affect me.  I also read some very compelling evidence that diet has a profound effect on not only cancerous cells but on overall health.  I decided to begin by altering my diet and to wait and see what treatment would be prescribed post mastectomy.

May 18th the day of surgery finally came.  Things went well in the operating room and I woke feeling better than I had anticipated thanks to the drugs administered during surgery.  The night in the hospital was uneventful except that I woke in the night to itchy skin that developed into hives.  The morning after the surgery I was given a second dose of Percocet for the pain and the hives immediately got worse and as the nurse was going through the discharge paperwork, my throat started to swell.  Two Doctors, and five nurses later, I was admitted to the ICU for observation for the allergic reaction to medication.  My overall positive experience at that point took are sharp nosedive from there.  The ICU was not comfortable and my new nurse was not nice and I'm sure I was the healthies person to be in ICU ever.  I really didn't need to be there but I followed protocal. 

It wasn't until about a month later that I was sent to see the Surgeon for a delayed post surgery follow up.  He had met with the "tumor board", to discuss my follow up treatment.  I was told at that point that radiation was the recommendation, so I scheduled a visit with the Radiation Oncologist.  During my hospital stay and ICU visit a Doctor there had some blood work done and one of the tests indicated that I had borderline Lupus.  As I discussed this with the Oncologist I learned that people with Lupus are not candidates for radiation.  I was not too disappointed since due to my research, I had reservations with radiation as well.  The Oncologist asked if I would at least consider chemotherapy and if the answer was yes, she thought I should have what is called an Oncotype DX test done.  So off went my sample of breast tissue to a lab in California for the super expensive Oncotype DX.  Two weeks later I had a test result of 48.  I understand that it means I roughly have a 48% chance that there could still be some cancerous cells running free somewhere in my body ready to attack me again.

During the two weeks the test was being done, I continued my study of chemotherapy and coupled that with lots of prayer.  I really felt led to certain studies, and to a holistic conference in Salt Lake City.  I am generally a bit cautious about how much credence I give to information coming from sources outside of the mainstream medical community.  However, what I was learning from other sources really resonated with me and made sense.  One thing I have learned above any other is that in the treatment of my body I need to take the lead.  No one cares more about my well being than me.  I have to be as informed as I can be, try to be open minded and to make choices about my own care.  I don't expect other people to understand or agree with my decisions, but I know for me, chemotherapy is not the best option.  I would never have thought I would make that kind of a decision, from the outside looking in it seems a bit irresponsible.  It has not been an easy decision in that it is frustrating to the Doctors and to others around me including some family members.  But I feel completely at PEACE with my decision.  So for me it was cut only; no poison, no burn.




Thursday, August 23, 2012

A blessing called Crossfit IOTA

Two weeks after the loss of our baby I was frustrated at my bodies inability to carry our son.  I was angry and needed an outlet.  A friend introduced me to CrossFit and after a couple of brutal workouts I was hooked!  It was just what I needed to give me something to think about, something for me to physically do that I could control, and a new group of friends to support me.

Every workout is an opportunity to push myself more than I think I can be pushed.  It is a chance to see something that looks unattainable, but to try anyway and then every day to succeed.  Okay, so I don't break any records and I barely survive, but I do it.  I feel so empowered when I pick up a barbell and lift it over my head.  When I want to quit I can push through, powered by my frustration at life.  Then, instead of being a negative thing, my emotions become my catalyst.  I can't change that my baby died.  I can't change or control what other things life chooses to throw my way, but every day I can control whether or not I push my body to do one more rep than I think I can.  It's simple but powerful.  It makes me realize that I can stick with it and do something amazing, even if it only lasts six minutes.

Fast forward through some interesting months where I lost my driver's license (injustly of course), took an amazing trip with my husband, and generally tried to work through the grieving process...and I continued to enjoy the challenge of CrossFit.

The first Friday in April we did a particularly challenging workout.  I can't remember what the workout was called now, but it was one with 100 pull ups.  I went home with shaky arms.  My chest and arms ached and that night and as I was kneading my sore muscles I noticed some lumps that felt odd.  They were on the left side and not on the right; that was the part that concerned me.  On Monday morning I called the Dr.and scheduled an appointment.  He called the lumps suspicious and sent me for a mammogram.  The Radiologist saw not lumps on the mammogram but lots of clusters of "micro-calcifications."  The lumps were too far out near my armpit to show up on the mammogram but they did show up on ultrasound.  Again, both things were "suspicious", and "concerning" so I was sent for some biopsies.

Waiting is the name of the game with Breast Cancer I have decided.  Everything is hurry and schedule appointments and then wait for tests, wait for test results, wait for decisions.  It wasn't until about the 18th of April that I got confirmation that yes, I have two types of Breast Cancer. Invasive Ductal Carcinoma and Ductal Carcinoma In Situ.

Thank goodness for CrossFit!  If I hadn't been so sore from that workout, I most likely wouldn't have noticed those lumps for some time to come.  Not only was I improving my health through excercise, it most likely saved my life, Amazing!  My current life calls so this will be continued later...

Wednesday, August 22, 2012

A tiny Box

I have another minute so the story continues...
 
So on October 15th 2011 I delivered our tiny son.  We decided to name him after both of his grandfathers, John Vincent.  Adult sounding names for one who will never grow old...but names that connect him to us.
 
After a weekend of deliberation, we decided to have a small family memorial to give closure not only for ourselves but for those closest to us who were looking forward to this new birth along with us.  I didn't realize how hard it would be, seeing that tiny little box on the grass next to a tiny little hole waiting to envelope not only a physical part of me, but my hopes and dreams for that child as well.  I realize that while this was extremely difficult; that it would be ten times more difficult to bury one I had spent more time with, held and snuggled.  I cannot imagine how much harder it must be for a mother who has heard her childs laughter, dried his tears, and heard him call her name.
 
It was a beautiful little service and a sweet opportunity that my friends took to come and offer their love.  I was showered with love, offers of help, shoulders to cry on and the florists delivered a garden to my door.  I am amazed at the thoughtful, wonderful people who surround me and who reached out to me.  My burden was not erased, but I had friends to help me carry it.  I am so grateful for that.

True heart break

I have finally decided to sit down and start to journal the events of the past year.  I am going to try to recall as best I can the things I have experienced as well as the emotions I have experienced, but since it will likely take me some time, it will take many posts.  I will probably include present experiences as well but hopefully the posts will eventually link together and make sense. 

A year ago I was pregnant for the sixth time.  I had lost two of the previous pregnancies but things seemed to be going well with this one.  At my 16 week Doctor's appointment my Doctor told me that with the strong heartbeat he heard and how well things were progressing I was down to a 1% chance of miscarriage.  One night in October I woke up with an extreme headache, worse than all but one other headache in my life.  It persisted through the weekend and I called the "on call" doctor and was given some pain reliever deemed safe for pregnancy.  The headache continued through the next week and my blood pressure started climbing which was very rare for me.  I visited my OB and while he didn't check the baby he thought everything was still ok I just needed to get the pain under control from the headache and everything else would even out.  He sent me to the Immediate care clinic where they gave me a shot for the pain.  It really didn't work.  I decided just to wait things out until the next week when I had the 20 week ultrasound. 

I was quite concerned as we went in for the ultrasound but didn't dare explore those feelings until the ultrasound tech informed us that there was no longer a heartbeat.  Pregnancy is emotionally and physically difficult for me and shortly after finding out I was pregnant my husband and I decided that this pregnancy need to be my last so we choose for him to have a vasectomy.  So when the ultrasound technician, (and shortly after the Dr) informed us that our baby was dead, we knew this was the end of our childbearing journey.

A few hours later I was admitted into the hospital to deliver our baby.  What an emotional day and night!  When the social worker came in asked if we preferred burial or cremation it brought on a whole new level of grief.  In the past when I lost a baby, there was no resting place, no memorial, just broken dreams and tears.  This time I actually would have a place to mourn the child that was lost to me.