Lain's Log

More fear

February 28/11

After researching core needle biopsies, I was afraid of the pain. So many women had bad experiences due to the improper use of Lidocaine. Decided to write a letter to Dr. Korb, the man who would conduct the procedure the next day. I explained my anxiety and said I wanted to be one of the lucky ones to have a GOOD experience. Enclosed a few of the comments I'd read, (from women who suffered severe pain), plus an article about Lidocaine use. (can you believe I would do this?) Told him I'm sure he's highly skilled, but that I am horrible when it comes to dealing with pain. I drove to the clinic, parked out front and delivered the letter to the office in person. The nurse said she would give it to him.


February 18/11

Got a call from my GP's secretary saying the doctor wanted to see me right away in regards to the mammogram and ultrasound tests. She had spoken to the doctor at the clinic. I freaked. There must be something wrong. Called Sam and left a message, called Carrie and cried. She tried to make me feel better. My son Max said he would accompany me and hang out in the waiting room to be there for me when I come out. When we arrived at the parking lot, someone shouted, "Hey!" We were surprised. It was Sam! Now I had BOTH my guys there to support me in case it was bad news. We waited quite a while. Finally, I went in alone. After all the fuss and fear, the only thing my GP wanted to tell me was that I now have an appointment for the ultrasound-guided core biopsy on March 1st. Ai yi yi. I had already been TOLD this in a phone call! Wasted trip for all three of us and huge anxiety for nothing.


Mammogram & ultrasound

February 17/11

Went to the Spadina/College clinic for the mammogram and breast ultrasound. The ultrasound was conducted by a man named Ken. The nice woman who did the mammogram was asked to sit in as my "escort" during the procedure. Ken had a tough time with the ultrasound, telling me I have something they refer to as "breast mice"! This means the lump moves around and they have to "chase it" in order to get a good image. When it was over, (I heard they don't usually tell you anything), but one of them said, "Well, there's SOMETHING there. It's not NOTHING you're feeling." They also told me it didn't exactly seem like cancer but then again, didn't exactly seem NOT like cancer either! Great. It was decided I should go for a core needle biopsy. The soonest appointment I could get was March 8th, but I asked to be put on the waiting list for March 1st.

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Pain, Pain and More Pain (so says Hollye)

February 16/11

Naturally, the reporter in me has to do research into everything. Though hoping for a good result, I have the distinct feeling this could be cancer. So, reporter hat on, started Googling and reading everything I could find. Stumbled upon a blog by an American nurse named Hollye. She is still in hospital following a double mastectomy. Her blog is published on the Huffington Post site. Since one of my biggest fears is pain, I was horribly shocked to read about her own pain situation. If you dare, you can read her comments for yourself at:
I decided to write an email to Hollye and find out more info about the drugs she WANTED and DIDN'T get and what advice she might have for me. Don't expect to hear back from her, but you never know.

At the moment, I just feel like doing nothing at all, or better still, just hiding under the covers for 24 hours in a drugged out state to shut everything out of my brain.

On the flip side of Hollye's horrendous story, there are tons of other women who have had scares which turned out to be nothing. Am hoping for that, but the one thing I continue to be confused about is the pain. Why is it there? And the pain is not just in the breast, but also in the gland area under the right arm. Never a damn dull moment, as usual.

I was later surprised, when Hollye DID respond to my questions. I believe she was writing from her hospital laptop. An amazing woman. This is some of the helpful information she told me about her own situation.
I had spinal meningitis a couple of years ago (crazy, I know). For the (three!) spinal taps that I had, I received Dilaudid (which is 5 time's stronger than Morphine).

Morphine is the standard practice of care in the US; however, because I had had Dilaudid and knew that it worked for me, I requested it specifically for my post-surgical pain management. Well, not only did they NOT give me the requested dilaudid, but they forgot (literally forgot) to turn on ANY pain medicine.

Let me explain. After double mastectomy surgery, everyone gets a basil rate of pain medicine, which is a consistent amount of pain medication delivered through an IV. Patients also get a PCA (patient controlled analgesia) for what is called "break through pain" (pain that overrides the basil rate). Break through pain can happen when patients start moving after surgery, for example. Does this make sense?

As I mentioned, the standard practice of care in the US is morphine for both the basil rate as well as the break through pain. I knew that was not enough for me and, being a nurse, advocated for a different medication (Dilaudid).

After surgery, I was sent home and instructed to take Percocet by mouth. This drug is a combination of acetaminophen and oxycodone. This also did not work for me. So, after my palliative care consult, I adjusted my home medication to Dilaudid by mouth.

Many people will say that Dilaudid is "addictive". It can be; however, I had absolutely no problem stopping the medication. There were no issues because I was not in any way tolerant or addicted to the medicine.

I'm not suggesting that you go for Dilaudid, by the way....rather, my suggestion to you would be to have a very long talk with your team to figure out what, based on your history and current plan of care is best for you.

I would also encourage you to include Palliative Care as part of the team. There is a great misconception about Palliative Care, i.e., that it is for end-of-life care. Well, that is one aspect, but the primary role is to specialize in pain and symptom management. Having the Palliative Care team as part of your health care is the best way, in my opinion, to ensure that pain and any coinciding symptoms (e.g., constipation) is managed.

My Oncologist works very closely with my Palliative Care doctor.

I hope that this is helpful to you, Elaine. Please let me express, again, my condolences that you have to endure the F-Bomb that is breast cancer.


Can't wait any longer

February  15/11

Eleven days since "the discovery" and the pain is still very much there. I've often heard that breast cancer lumps don't usually involve pain, so I'm hoping for the best. But why is this pain going on so long? I called my GP and asked if I could get in right away to see her. Got an afternoon appointment and told the Doc about the pain and the lump. She checked and could definitely feel it. She gave me a requisition for a mammogram AND an ultrasound. I told her I already have an appointment for a mammogram for March 4th, but I would try to find someplace to do both tests together, and hopefully sooner. I was frightened when I read my doctor's notation on the requisition which stated, "Nodularity in right breast." Didn't sound good. Then, my brain went into comic mode. My son loves old reruns of M*A*S*H, and I suddenly thought of Father Mulcahy saying his famous word, "Jocularity! Jocularity!", and imagined him wandering through the 4077 proclaiming, "Nodularity! Nodularity!" (I know, I'm weird).

Called the Medvue Medical Imaging Yonge/Davisville lab, (where the mammogram was booked). Was told they have two other locations and I could try calling the other labs to ask if there was anything sooner.
Called the second one (Edward Street location), but nothing until much later in March. Finally, called the College/Spadina Medvue lab and got the nicest woman on the phone. Told her my problem. She suggested it would be best if these two tests could be done together. I said that's what I want, but so far, no luck. She put me on hold for a minute, then came back on the line to tell me she had an appointment for me for BOTH tests, one after the other, on February 17th - just two days away! WINNING!! Booked them and then called the Davisville lab back to cancel the original mammogram.

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The discovery

February 4/11

Woke up in the morning with pain in the right breast. My first thought was, "What? Did I walk into a wall or something?" Then I felt it and immediately noticed a lump that wasn't there before. Ran downstairs to call my doctor regarding a mammogram, but saw the mail had been delivered. Grabbed the letters and ironically, discovered a form from the Ontario Breast Screening Program advising me it was time for my annual mammogram! How strange is that? Called the number immediately and asked to book the earliest appointment possible. They reported the earliest was March 4th - a whole month away. I wasn't happy, but booked it anyway.

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The dramatic history

I've always believed I was lucky. I had parents who loved me, lived in nice houses, enjoyed the schools I attended, made good friends, had lots of adorable boyfriends, somehow managed to secure several terrific jobs in the world of news, made money doing what I loved - interviewing thousands of TV and movie stars for radio, TV and print, travelled to Los Angeles and New York, stayed in fancy hotels, (courtesy of movie companies), met and married a fabulous man, was blessed with two unbelievable babies (now 18 and 16), had the most caring, loving and supportive family imaginable and was happy and healthy most of my life.

Guess I shouldn't have been surprised when things took a sudden change over the past five months. My beloved Mum, who raised my sister Carrie and me on her own, had been facing some very tough health issues in the last decade of her life. From 2000 to 2010, she came through several bouts with cancer, bravely took on chemo, radiation, (which was unsuccessful), a colostomy, early onset Alzheimer's, a hip replacement and two cataract surgeries.

As things became more complicated, I quit working in 2004 to spend more time helping to look after her growing needs. It was challenging for Carrie and me to guide Mum through this maze of appointments and hospital stays, while making sure there was always food and supplies in her home, clean laundry, medications at the ready and on and on.

On the flip side, I got to know this phenomenal woman even better than before. Miraculously, she always managed to maintain her offbeat sense of humour, even in the darkest of hours.  Despite crushing anxiety and overwhelming panic attacks, she took it upon herself to boldly go where no eccentric grandmother had been before!

Though I've never been a Trekkie, I know Star Trek has had an influence on me. Both Mum and I always loved William Shatner. I still do. His infamous Captain's Log has helped me to launch Lain's Log. I only hope I can live up to the daring antics of James T. Kirk as I boldly try to conquer what lies ahead.

On October 19th, 2010, Mum unexpectedly died at Sunnybrook Hospital of complications due to surgery for an abdominal blockage. We'd been told she could go home about five days after surgery, but she was unable to recover. It was a horrible death to witness and the saddest day of my life. This was followed by months of devastating grief.

Over the next few weeks, we carried out Mum's wishes to be cremated and to plan a Celebration of Life event at her home, scheduled for November 20th.  In the midst of these plans, my dear Mother-in-law suddenly had to be rushed to Mount Sinai Hospital by ambulance due to heart problems. I stayed with her in emergency that day. Later, she was admitted for tests and told she needed open heart surgery.

Since there was no surgical availability, she remained in hospital for 23 anxious days before the procedure could finally take place.  During that time, I often drove my Father-in-law to see Mum or drove him home afterwards. It was a long and scary wait time.

My own mother's Celebration of Life was held, as planned, but sadly, my Mother-in-law could not attend. The special tribute to Mum was complete with catered food, drinks, heartfelt speeches and music performed by friends and the many talented members of our family. Somehow, through my tears, I took on the duty of "M.C." It truly was an unforgettable day.

On December 2nd, (the day after my Mother-in-law's heart surgery), our beloved Uncle Ev (my lifelong "surrogate Dad"), was admitted to St. Mike's Hospital for bladder cancer surgery. At age 97, we were very worried about him and visited often. Two days later, I was able to bring his 91-year-old wife, (my Auntie Ray), to the hospital to see him on their 62nd wedding anniversary. They had a good visit.

Days later, on December 7th, my Mother-in-law was released from hospital, her surgery a success. I drove her home, along with my Father-in-law and their daughter, Jan. We were thrilled to see her home and doing so well.

Meanwhile, the family formed "Team Ev" and we took turns visiting him daily in the ICU. We were all devastated when he took a turn for the worse and passed away on December 14th. Ev's son, Kevan, (my cousin), was with him when he died. My kids and I got together that night with Kevan, his wife, Marilyn, their daughter, Sacha and Auntie Ray to share stories, tears and laughter about Uncle Ev.


More sadness hit us as we tried to come to grips with the loss of a second member of our very small family. Again, cremation was arranged and another Celebration of Life party planned in honour of Uncle Ev. It was held on January 16th at the Women's Art Association of Canada.  Once again, we heard emotional speeches, listened to beautiful music from family and friends, and I found myself back at the microphone as the "M.C".

My sister and I had started the process of clearing Mum's home, the little bungalow she loved so much. Sorting through her belongings, clothing, costume jewelry, trinkets, souveniers of trips, books, papers, thousands of greeting cards and newspaper clippings, sharing all kinds of memories, only wishing Mum could be there with us.

While still dealing with the losses, meeting with the lawyer for the house, preparing to get it on the market, I made the discovery of the lump in my breast, which brings me to my next journey.

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