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Sunday, September 6, 2015

Unexpected drama

My life has been going along very smoothly for the most part since I have last posted.  Paul's business has been doing well, and I have been trying to keep up with the kids.   I have had a few breast cancer recurrence scares with a breast lump that my oncologist felt during an exam that turned out to be a cyst, and shoulder pain which ended up being a rotator cuff injury.  In the beginning of June I started having right sided chest pain that would come and go and a feeling of fullness in my chest.  I was still able to work out and wasn't that bothered by it.  I even did a hundred mile bike ride without problems.  In the back of my mind I was concerned that it could be pain from metastatic breast cancer (breast cancer that has spread).  But I have learned that I can't get upset about every little ache and pain I have or I will drive myself crazy!  I went to Philadelphia June 17th -20th to a conference for people with BRCA mutations like myself and was having the pain there off and on too.  On June 22nd, which is my mothers birthday, I decided to ride up Emigration Canyon after work  with my 12 year old Jacob.  About half-way up the canyon I started getting what felt like a really terrible side ache.  I told Jake to go ahead and I would meet him at the top.  The pain started getting worse and I started having a lot of shortness of breath.  I wanted to stop but felt like I had to get to the top because Jake would be there waiting, and also in my mind, I thought that it was just a terrible side ache and would go away as soon as I started going down the canyon.  I finally made it and we started down the canyon.  About half way down the pain was increasing and I started to get scared so I called Paul to see if he could come and get me.  He was in Murray and started driving towards the canyon, so we coasted down the canyon.  After arriving home we went to the ER and driving there I was pretty sure that I was going to have a metastatic pleural effusion from breast cancer metastasis to my lung.  It turned out after a chest x-ray, I had a pneumothorax, which is a hole in the lung that leaks air out into the chest cavity.  It is also called a collapsed lung.  By that time I was a little more comfortable and wasn't having too much trouble breathing so instead of draining the air, the Dr started my on Oxygen and sent me home with instructions to see a pulmonologist the next day.  I spent a week on Oxygen and slowly my lung healed and the air outside my lung absorbed.  I had a CT of my chest and everything looked great.  A week later I was given clearance to go back to my usual activities so I went out running and felt great!  I went again the next day and about 1 1/2 miles into my run I started having the same chest pain and shortness of breath.  I called a friend to come pick me up and take me to the hospital and sure enough the pneumothorax was back.  Because it had happened a second time I needed to have surgery to repair the hole in my lung.  I was sent to IMC admitted and scheduled for surgery the next day (July 8th).  I had the top part of my right lung removed and a procedure called a pleurodesis which basically scars the lung to the chest wall so it can't collapse.  The surgeon was concerned that the hole in my lung was caused from breast cancer metastasis, but the pathology showed no cancer.  It turned out the my lung was fried from the radiation that I had 3 years earlier to treat my breast cancer.  This is an extremely rare complication from radiation for breast cancer.  I spent nearly a week in the hospital and had to have a chest tube which was quite painful.   On the day I left the hospital I noticed some pain with swallowing, it has persisted and after a lot of testing, we think that it is from the staples that were used to seal my lung.  They are lying right next to my esophagus and airway.  I am almost 2 months out from the surgery and still having a lot of pain, irritation, and difficulty swallowing.  My original surgeon pretty much told me I was crazy and there was nothing wrong with me and I needed to see a counselor.  He said that the difficulty swallowing had nothing to do with my surgery or pneumothorax and would probably have happened anyway????  He stopped returning my phone calls which made me feel very panicked.  I have switched surgeons since.  Emotionally it has really set me back.  I think I have a lot of PTSD from my original cancer diagnosis and a lot of my anxiety has returned.  Because of all the stress I started waking up at night with panic attacks, and crying a lot during the day.  I had a lot of plans for the summer to do fun activities with the kids but haven't felt like doing much at all.  I had a few weeks when I didn't feel like even getting out of bed, and didn't get up very much.  I ended up finally seeing a counselor and I started an antidepressant/anti-anxiety medication which has helped.   I am afraid that I will have this pain and difficulty swallowing forever.  I am trying a course of steroids now to see if it will help with the irritation, but I haven't had any improvement yet.  I am back to work and just try to keep myself distracted which helps but I really haven't had any improvement.  I have some more appointments this week so hopefully we will come up with a plan for me to get better.   I wish I had a better update.....another 3 months of my life that cancer has ruined.