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.