I have decided, like others in similar circumstance, that this is a great way to stay in touch with all the people I care about when I am unable to manage that any other way.
SUMMARY
I was diagnosed with breast cancer in October of 2011. I was given full treatment including chemotherapy, surgery and radiation. In August of 2012 I was diagnosed with metastatic breast cancer, metastases to the spine and pelvis. The current plan is to use chemotherapy to try to slow disease progression and radiation for symptom control. A five day course of radiation has already been completed Sept 10-14 and has remarkably reduced pain and improved abdominal symptoms. Intravenous chemotherapy will start on Oct. 11.
THANK YOU
I want to extend a huge heartfelt thank you to each one of you. I am so grateful for your thoughts and prayers, words of encouragement, cards, and gifts. And for ALL the food!!:) To those that are close and able, thanks for looking after my kids as though they were your own.... I think my kids think this is one big fun time. Both sets of grandparents have been putting their own lives on hold and taking turns staying with us. They so graciously look after us and the household and everything.... we are so so grateful.
BACKGROUND
Diagnosis: Life is full of surprises... I was having some discomfort lying on my left side, and on investigation I found a lump under my arm. Just a small, happy, non-adhered bouncy thing and I wasn’t overly concerned. At my family doctor we couldn’t find it, but she believed me and sent me for ultra sound. Mammogram did not find anything in the breast, but in spite of that, a very savvy radiologist (Dr. Elliot) ordered a biopsy for the lump under my arm that could be seen by ultrasound. When I went back for results I knew that my life was going to change as soon as the doctor came in. She looked so upset and she didn’t waste any time. She said “I can’t believe it, but your pathology is positive for breast cancer”.
Treatment: We did chemotherapy up front December – March. One advantage of doing chemo up front is that you can tell if it is working. We stopped the first set of drugs early because it didn’t appear to work. Then it started to look like the second drug also wasn’t working. Surgery was April 19th; a radical left mastectomy with lymph node removal. The pathology report following surgery was a bit alarming. The tumor in the breast which had initially been indiscernible had grown to 11.5 cm and there was no evidence that the chemotherapy had done much damage to the main tumor. This was not a case of anything being done wrong, but sometimes chemo just doesn’t work. A month after surgery we started radiation to the left chest area including lymph nodes. Twenty treatments were completed without event by the end of June which couldn’t have been better timing. Summer was here, treatments were completed, disability still believed I should be off work and my life seemed to be perfectJ
The Rest of the Story: Except I had this back pain.... it was between my shoulder blades, worse with heavy lifting and at night. It wouldn’t go away. I tried some old fashioned treatments; I went home to mom and dads’ and rode horses, dug in the garden, rode the quad, and babysat cows one week. I even pretended to throw calves one weekend when my brother and his family were home processing animals. He finally put me on a horse, I think, just to keep me out of the way. I thought maybe a good stretch would put me rightJ, but thankfully, in spite of a few normalish mishaps nothing broke. I wasn’t ignorant of the possibility of metastases and a pathological fracture, but ignorance truly was bliss those weeks at home. I started going back to docs for follow-up. Four different docs and numerous tests later it was determined that I had metastases in my spine and pelvis. It is crazy ironic to me that while we were carefully radiating the left chest to clean up any remnant of tumor it was busy raging elsewhere. It’s not a very nice nor very predictable tumor.
PROGNOSIS
I have tried to pin my oncologist down, but he says “ask me in 2 months”. That was almost a month ago...? I tried 10 months, but he seemed to think longer, then I tried 12-18 months and he wouldn’t commit. We need to see how the tumor responds to treatment.... Some of you may be a bit perplexed by the title of my blog, but I feel very settled about it. The worst (bestJ ) that can happen is I have to change it to “My Long Journey Home” or, with a miracle, maybe just to “The Bailey family”. I am glad that I have lived for this.... be it 2 months or 50 years the end is inevitable. This experience just strengthens my desire to live well for things beyond this life.
PLAN
There is no plan to fix me now. At this point they offer chemotherapy to try to slow progression and radiation to spot treat areas that are symptomatic. My oncologist, who I have come to love and respect, explains it like this. We are going to have a train wreck and we know that, but we want to try to slow the train down and have a more controlled wreck. He has seen the other scenario, as have I, and it is much more unpleasant. Strange that I like my medical oncologist since nothing on the chemo front has been useful yetJ
HOW WE ARE DOING
I have never had so much peace, joy and satisfaction as I have been given during this experience. I have sorrow too, but it is woven in and bearable. I am so grateful that God is so faithful and He has been so near of late. The extent of my support system is indescribable. My little family has been sheltered in this terrible experience. There is a hymn and it says, “My heart is resting Oh my God, I will give thanks and sing”.... and another line says, “ I pass my days in sweet content” This is my experience these days.
I know... some of you may be thinking that I must already have brain metastases, but I assure you this is real. I am not unaware that there are some very real and terrible realities. I have a husband I love dearly and two beautiful children and it brings tears just writing this. BUT I also have a very real hope. I don’t believe God ever takes away, but that He gives back more. Me, I am going on to better things (with the help of Heaven). My family; God will take care of you. I promise.
TREATMENT IN THE METASTATIC SETTING
Radiation- Sept 10 – 14: I have had fantastic results with radiation so far. The pain in my back was unbelievable and quite debilitating. I was also having trouble with my tummy and it became almost non-functioning landing me in emergency multiple times. The radiation has made the pain much better, improved mobility and my tummy is almost back to normal. Happy happyJ
First Crack at Keep-In-Check Chemotherapy: We started an oral chemo last Wednesday, called Xeloda and it had a fairly mild side effect profile. Perfect. Thursday I was so lethargic and uncooperative that g’ma called nurse next door (aka JJ aka Jen Jordan Banff
Crummy news: Not what I wanted to hear, but no more Xeloda (my only choice of oral chemo)... the doc says to “keep trying” could land me in serious trouble.... I did ask of courseJ. Apparently, some people don’t metabolize this drug well or maybe this is just another of my weird reactions.
Current Chemotherapy Plan: So the next plan was to start intravenous chemotherapy on Oct. 4. But today (Oct. 2) it was decided that I am too sick (with a cold) to start Thursday so now the plan is for next week.... and instead of one drug the doc is thinking of using 3 at a lower dose... will see what happens. Even though these are intravenous chemo they have a slightly milder side effect profile than previous chemos.... well mostly. One drug is very hard on veins so there is a plan to insert a port-a-cath (central line). It is an under the skin version so should be easy to manage with the kids and all. And yes, the teaching sheet does say hair loss or thinning... here we go again...:) Good thing I didn’t give away all my various head coveringsJ
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