Tuesday, November 6, 2012

Pathology, the Constellation and WTF!

September was a beautiful month. Dick flew home from Turkey a few days after my surgery and we embarked on the next part of the breast cancer journey together. My recovery from the lumpectomy and sentinel node biopsy went well though I worried about the numbness near the incisions and especially in my armpit. However, I was back walking with in a few days and started range of motion exercises too, in hopes of warding off lymphedema which is a swelling of the arm and sometimes even the breast following the removal of lymph nodes. I credit my yoga practice and degree of fitness to the rapid recovery. I saw my awesome physiotherapist Paolo, a week after surgery and his calm words of reassurance were welcome. He carefully checked all the muscles and nerves affected by my surgery and was genuinely pleased. He told me he would manage my physiotherapy needs and refer me to a specialist lymphedema P/T if needed. Paolo has kept me trekking for  the past few years and I trust he will do so again once we battle this beast. Gotta say too that we talked chickens as he and his family have had them for years. He invited us to visit and see their chicken coop (Dick had already drafted our coop) the next day. Fun - we got to meet his wife and two wild little boys and the new baby I had brought knitted animal hats and tiny felt slippers for from Nepal in May.  

The first 10 days post op flew by and with our great Indian summer weather, I "supervised" Dick in the  yard, helping where I could and waited patiently for my pathology results. Since I had been told it would be a minimum of 7-10 business days, I thought I handled the wait reasonably well until about day 8. It was as though a weight settled over me those last few days and by the Friday before my my Sept. 21 appointment with the breast surgeon, I was beside myself. I was totally irrational and I was barely breathing again and felt paralyzed with crazy thoughts. It did not help that when I called MSJH late Friday, results had not arrived, yet the appointment with my breast surgeon was at 0800 Monday.

0800 Monday, Sept. 24. Funny how so many dates since July 18 are imbedded in my brain. Somehow I don't think "chemo-brain" are going to erase them either. The results had arrived late Friday. First a quick examination by Dr. Dingee. She was pleased with my range of motion, activity level and advised 3M paper tape for  a possible "seroma," yet another BC term I knew nothing about. Then she cut right to the chase - handed me a multi page copy of  my pathology results. She called the findings a "constellation of cancer."  As she described the constellation, it hit home that nothing from my July core biopsy pathology was even remotely the same. Breast cancer, it seems, is rarely simple and in my case seems to have morphed from a simple lump to a fucking constellation! Even though I had known that during surgery, my surgeon had found a couple of "pearly" looking nodes and a second lump, I had thought that a maximum of 4 nodes would have been taken as that is the norm for Sentinel Node Biopsy. Not so. Another WTF moment.

So here is the constellation:
  • 6 of 8 lymph nodes positive for metastatic spread
  • Extranodal extension is present - (had to look that one up!)
  • Invasive carcinoma near or on the surgical margins
  • Carcinoma (main lump) measure 3-3.5 cm (used to be <2 cm)
  • Second lump is described as a 7 mm lymph node replaced by metastastic carcinoma
  • Extensive lymphovascular invasion
For the first time since July 18 when I found my own lump, tears trickled out of my eyes. Short lived as I knew I needed to concentrate. Dick took notes, I tried to understand what all this meant. Referral to a medical oncologist and a bone scan and CT scan were ordered and all to be done on a "rush" basis. 

I went to a yoga class the next morning. During Shavasana, usually one of my favourite parts at the end of the class, I found that tears were literally pouring out of my eyes. I bolted outside into the sunshine and sat there in disbelief, while the tears continued.  But I guess that it was finally hitting home - I really do have an aggressive, fast growing cancer. 

More radioactive dye was injected into my veins for the two tests. Technicians can no longer use my right arm for accessing veins due to the possibility of lymphedema. One silver lining occurred to me later - I did not know that 8 lymph nodes had been taken or I might have been gentler with my exercise regime - yay, full range of motion even with 5 axillary nodes and 3 sentinel nodes missing! I digress, left arm black and blue and the techs can't use wrist or hand veins as dye is so toxic it can cause nerve damage. But veins are found, 3 pokes for each and an ER nurse rounded up for the CT scan poke. He is amazed at how difficult it is to find a vein. 

We meet the medical oncologist (MO in my new BC jargon) a week later. Chemo treatment plan discussed and we find that chemo room is full so I go on a wait list. "Hurry up and wait" yet again. MO also orders a referral for vascular surgery so that I can have a port inserted to spare those useless veins. We go home and I spend the next two days on the couch learning about chemo drugs, Neupogen (man made growth factor that boosts white blood cells counts decimated by chemo), FairPharmacare and the Victory Program. Half a day on the phone dealing with the payment for Neupogen. Lucky for me (and I mean this) we do not have to pay the entire cost of $200 for each vial of Neupogen. I will need 7 vials for each of the 8 cycles! And I have to inject it myself. Papers and books everywhere.

A week later I got a call with a cancellation at VGH vascular surgery for my port insertion. That was good, something to do! Conscious sedation, a cute French Canadian vascular surgeon who was so fast we were still talking about chickens in Kerrisdale and bears near his house in North Van when it was finished. One more thing ticked off in preparation for chemo.

Fast forward through another week when I bounced from one set of emotions to another. We went to a 2 hours session of chemo teach and appreciated how reassuring and knowledgeable the nurse presenter was. That Friday the phone kept ringing. A PET scan ("Dr. Susan Love's Breast Book" says "no, this is not something for your cat or dog" - I love that book!) was ordered for Monday at 0745. I was off the wait list and my first cycle of chemo was also Monday. So, on October 15, also our 29th wedding anniversary,  chemo started.  I thought that was just fine - we will look forward to really celebrating our 30th, hopefully at the end of this journey. Dick did buy me beautiful flowers which are still looking good weeks later. 

Next post will be more fun, I promise! 
Dick and I surveying a possible Turkish home in August, 2012.


  1. Wanted you to know your blog is very much appreciated by yours truly. You have articulated the anxiety, gratitude and fears, among other emotions, that present themselves with this disease process. Your strength and intelligence thru this is truly an inspiration. Love you for it. ~ Susan

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