Mixed Feelings and Looking Up

This post will be a bit of a hodge podge of what has been happening for me lately.

It was inspired by a comment that a friend made on Facebook about how hard it is to stay positive and questioning whether it was worth it.

Life is not easy.

In the past couple of weeks I have continued to work on getting Mom's affairs in order, I had my genetics appointment, I had my port removed (ouch, but progress) I learned that my brother has been laid off from his job after being so excited that he had found a job last summer and on the heels of him grieving our mother's loss, and I learned that a very good online friend that I went through chemo with passed away on November 9th (there had been no indication for her or those of us who knew her that she had bone and bladder metastases, everything happened very quickly for her). She was a beautiful person physically and in spirit and the relationship we built over the short period of time I knew her was a special one. It was a real shock to go onto Facebook last Saturday evening and read of her passing.

I have also continued to experience sudden fatigue that stops me from whatever I am doing at the time, whether I like it or not. Due to this, I have been cut back by my physician to three half days of work a week, basically until the end of November but I did convince her to re-evaluate me next week, just in case I could progress sooner than that - can you tell I am frustrated with the one step forward, two steps back progress?

The genetics appointment really got my attention. The most common genetic syndromes that are associated with breast cancer are BRCA1 and BRCA2. There are some indications from my family tree that those might be indicated and one of the reasons I was referred to the Genetics Clinic. I, of course, could not just let that lie and wait until the genetics appointment that took over a year to get so I did a little research on that myself beforehand. Following this research, when I attended the appointment I was almost certain that the type of breast cancer that I had did not really match with BRCA1 or 2.

It seemed a little weird to be attending an appointment at the Children's Hospital, but that is where the Genetics Clinic is located, so there I was, waiting in a little waiting room on the third floor. I had anticipated that the appointment would take about an hour and had told my co-workers that I would call into a meeting that was booked for 2 p.m. that afternoon. That was naive of me.

The genetics counsellor that greeted me and took me back to her office was very smart and used a large genetics vocabulary that I struggled to comprehend. We went through the cancer history on both sides of my family tree very thoroughly. She asked me some weird questions like whether I had trouble finding hats to fit on my head and commented on some moles and scars on my neck where neurofibromas had been removed. She also measured my head.

After about one and a half hours, she explained that she also did not feel that I was BRCA1 or 2 but that she was strongly suspicious of another genetic syndrome. This syndrome is not tested for here in my province so there is some protocol that needs to happen in order to get approval for the testing. Part of this was that I first need to be tested for BRCA1 and 2 to rule them out. Results from these tests take about 6 - 9 months to receive back. It appears that nothing moves all that quickly in the Genetics world. Once they have been ruled out, we can begin the process of seeking approval for the other testing. I signed some consents, including one that allowed them to provide the information from my testing to my family in the event of my demise prior to getting the results, a sobering thought. In the meantime, she is advising my physicians of her suspicions so that they can screen accordingly and we have corresponded a few times since by email where she provided me with more information on this syndrome. They will also attempt to find any biopsy results on my father to start the process for investigation of another possible syndrome called Lynch Syndrome.

This 'suspicion' brings together and helps make sense of what seemed to be random medical occurrences in my past - it will be interesting to see how the testing progresses. There is no cure for this syndrome, only screening to detect abnormalities early. There is a risk of other cancers that they would watch for and my risk of a new breast cancer forming in the other breast would be about 25 - 50%. If  I turn out to have this syndrome, my lifetime risk of breast cancer occurring is about 85%, according to the latest statistics, no big surprise then that it did occur.

All a little mind boggling. A lot to digest and then there is the waiting, which I still am not the best at yet.

Put it all together with everything else that has been going on and I have been a little distracted of late.

Which brings me back to the 'staying positive' aspect.

Here is how I cope with it. My focus is not on being 'up' but on 'looking up'. When I turn this all over to the Lord and focus on my relationship with Him instead of worrying or problem solving, then I do not need to try within myself to be upbeat or positive. The ability to turn everything over and rest in Him and know that He is in control and will guide me allows me to take the focus off of myself and my problems and, as a result, I feel better - I become more positive.

Take care, everyone.

Deportation

Today was a long awaited day for me, I have finally been de-ported.

I'll explain.

Back at the end of July 2012, I had my power port inserted for the purpose of receiving the chemo infusions, and subsequently the Herceptin infusions which were completed on Octber 3rd, 2013.

My port has worked beautifully for me through the year plus that I have had it so I shouldn't complain, but it was just under my right collarbone and very prominent as that is also my operative side. There weren't many moments that I wasn't feeling some discomfort from it.

About two weeks ago I received the package in the mail that informed me of my impending deportation (my own description of the procedure). In preparation I needed to book labwork to be drawn three days prior to the removal, it included a CBC (complete blood count) and INR (a test to show how the blood is clotting). I was able to combine the bloodwork I needed post genetics counselling appointment (I will tell about this appointment in another post) with this lab appointment.

My genetics appointment was at the children's hospital here and my port removal today was at our newest hospital - I realized that after today's procedure I have been a patient at every hospital in our city - once again going above and beyond in my role with the health region.

My bloodwork must have passed as I was called yesterday with instructions as to where to report this a.m. and told to stay nothing to eat or drink after midnight.

Things moved quickly once I arrived.

There was no IV or sedation. The freezing was put in and I could feel the epinephrine in it making my heart beat a little quicker (the stinging of the freezing could have contributed to that also ;). Next thing I knew the surgeon was making his incision through the previous incision. There was a lot of pressure, pushing and pulling. I had to ask once for a little more freezing as he got deeper. I had been told by others that the removal was easy and took very little time, however this was not the case for me.

I will sum it up by copying what I wrote to two of my coworkers - my port and I had become quite attached to each other and it proved to be a difficult separation. The experience has left me numb.

Once done, the area was sutured, taped and dressed and then I was taken to an area to wait for a porter. While I was waiting they brought Rod over so he could go with me to the Day Medicine area and we had the opportunity to show off some of our pictures of our grandchildren to the nurse who waited with us.

I was observed in Day Medicine for an hour or so after the procedure and then we were allowed to leave. I've used an ice pack intermittently throughout the afternoon and early evening and taken some Tylenol - it is a little tender and achy but quite tolerable.

One more step towards that new normal.

Take care everyone.