Annual Update - LONG ONE...but Still Good News!

 Hello All!  

I know I have certainly been scarce on these forums this last year but that is because Life is busier than ever and I continue to get involved in new activities and adventures!

I had my annual scans and bloodwork last month.  Scans again came back NED!  Bloodwork all normal except for a Ca27:29 tumor marker that was 1 pt over the high normal range. While it was my highest result for that test yet, I knew from past discussions and readings here that most tumor markers are unreliable and certainly a few points difference were not significant.  I was not concerned at all and my original onc would never have even made mention of it, but my new onc did request I get it re-checked a month later.  I did the re-check yesterday and my numbers dropped 11 points, well into the normal range!

SO...as far as I know I remain cancer free 12 years out from my first dx and almost 7 years out (in Nov) from my very locally advanced second dx! I stopped taking the IV Zometa last July 2011 after 5 years of infusions.  I remain on Aromasin daily and will for the indefinite future since I tolerate it so well.  I  passed 6 years on Aromasin this past May.

There have been a few significant changes in my cancer world this last year.  My beloved onc who started treating me in 2000 with my first BC dx informed her patients late last year that she was making a career change.  She moved out of our area, back to the East Coast to immerse herself into research and professorship at an area university, while she also spends time with her aging father. 

I really felt like someone pulled the rug out from under me when I got the news, since I credit my onc with making innovative and leading edge decisions regarding my treatment modalities. She was always unafraid to think out of the box and was so well read on the latest research data that I believe she is a big reason why I am still here today.

Nothing stays the same however, so I found myself shopping for a new onc late last Fall.  I first went to the "Big Name" onc for an initial appointment, but knew immediately that my personality and his approach to medicine were not going to get along.  I have no doubt he is an expert in his field, but he is definitely "old school".  When I told him my desire was to monitor my status with annual scans and bloodwork and I hoped he was willing to trial me on Metformin, he immediately let me know he was not in agreement and it was his way or no way. Even with my degree of nodal involvement, he wanted no blood work at all, no scans and only would run diagnostics when I "presented with symptoms".  He was nice enough, but I need to know I am a part of the team making treatment decisions for myself and not just the object of the discussion.

I know this is an ongoing debate about whether to closely monitor or wait for problems to develop, but I have long been in the camp that detecting and treating early is so much better than waiting til disease has spread enough to create symptoms.  I know of expert oncs and radiologists who totally disagree with the old aproach of "what you don't know won't hurt you....why worry til you have to?" attitude.

So I reached out to a few professionals in the cancer world and found myself back at the same practice my original onc worked for.  I am now seeing another onc there who has been in practice for some time.  She is very approachable and flexible in her thinking which I like.  We have already had the Metformin discussion and I have agreed to compromise and wait til the first formal early reports come out from the current trial, which may be later this year. She already ran the Hemoglobin AC1 test on me and while pre-diabetic results are considered 5.7% - 6.4% my result was 5.4% and I have a family history, so maybe I can push for diabetes prevention. I am planning, though to discuss the Metformin issue with my PMD later this week also.  I know that the practice my new onc works for is a participant in the clinical trial of Metformin. While I do not meet the criteria to participate in the trial myself, it is possible my onc has her hands tied about prescribing the Metformin to me outside the trial setting. So I am going to explore my options with my PMD and see if he can network with my onc for her approval.

I do not want to start off on the wrong foot with my new onc since I believe she will be easy to work with and she is certainly open to any discussion I want to have.  SO...if I have to wait a little longer for more data to be available I will probably do so.

I had a little lymphedema event right before Christmas last year and have now developed early stage LE in my right arm in addition to my longstanding Stage 2 LE of the left arm, but it is well under control and I am staying on top of things with my therapists.

I continue to work in the local LE community by being assistant moderator of the monthly Lymphedema Support Group I helped start over 5 years ago.  I visit the local PT school as a patient case study for the clinical Lymphedema portion of their curriculum each year. I also assist my therapist when she works as instructor of LE therapist certification courses held in my area.  I am actively involved with several other LE projects both local and national which hopefully will bear fruit soon for the whole LE community!

I have also taken up a new hobby....quilting!  I have always liked to sew and used to do a lot of hand crochet and embroidery work, but with the LE any handwork is much more difficult and tiresome to do.  So a good friend introduced me to quilting and I have become somewhat obsessed with the hobby! When I am not running the household, going to meetings or working on my LE projects you will find me in my basement family room which has now been converted to my sewing/quiting studio!

I just finished a quilt for my 84 year old father who is still running an active farm in the midwest.  He likes blue and I found fabric with blue chickens and roosters I thought would be perfect for him!  Here is a look at my latest project:

I also made a wall hanging quilt that taught me alot about adding applique and stitch details to my quilts:

So I guess the bottom line of all this random chatting is.....I am doing FINE!  Staying very busy...enjoying new hobbies and so very GLAD and GRATEFUL that I am still here and able to count my blessings every day!

So as I like to do at least once a year, I want all the newly diagnosed ladies to take heart!  Fight Hard! I know there are lots of dark moments and doubts about the future during your early diagnosis and treatment phase, but there really is a LIGHT at the end of the tunnel!  You will get done with treatments, your body will start to recover, and you will find with time that Life takes on a whole new sweetness and joy!

Hang in there!  You can do it!!