Thursday, December 1, 2011

Latest news...

I am super excited to share my most recent results that I got back today. I decided after finding out that I can't get in to see my oncologist for another two weeks to at least try and get my brain MRI results. My gamma nurse called me back this morning to let me know that it came back stable! So happy to hear this news since I have been stressed and worried for the last several weeks about what was going on up there. I think that having this whole issue with my lungs again has just re-inforced that it can and will pop up anywhere at anytime. My medical staff seem to be happily surprised whenever my MRI results come back stable so this is great but it also tells me that this isn't the norm and I worry about how long it will remain this way. Not long after I returned to work I started having some headaches again. I tried to ignore it and put it down to being tired and just having to get used to working full time again. Of course, in the back of my mind I was wondering if the stress of returning to work and being busy again would cause my body to cave and relapse again. So happy to know that this is not the case and maybe I am tougher than I thought. I have to find some sort of trust in my body again that it will do what it needs to in order to keep those nasty cells from multiplying again and turning into a tumour.

It is definitely hard to wait for results ESPECIALLY WHEN YOU KNOW THAT THEY ARE SITTING IN YOUR CHART. It makes me feel that the system is failing me and that they are not as on top of things as I had hoped. I know that my pathology is going to come back as metastatic melanoma (apparently they could tell since it was black) but I have several questions about it like: how big? any lymph nodes affected? what now? I am very anxious to get in to see my doctor to have these and many more questions answered. I decided to reach out and get some information on my own and find out more about treatment options. I had a great conversation with a lady from Ontario this morning who is super involved in the melanoma world and has many connections and lots of information about things like treatment. It was very informative and now I have even more to speak to my doctor about. I did find out that the treatment that I have received so far is not offered anywhere else in Canada in my situation. This may be a good thing or it may not. I would hope that I am getting the top of the line treatments offered to me. If there is something better, then of course I want it.

My last blog I talked about my difficulties in the hospital with my last surgery. I have since found out that I was ticked off with the anesthesia people when it was actually the surgical resident that was the problem. I wouldn't have really known who he was since he never did introduce himself. I had a lengthy conversation with the patient advocate representative from the hospital and had all of my concerns heard. Sounds like a case of an arrogant surgeon (go figure). I've decided to put this behind me and just be thankful that the surgery was successful. I'm sure this won't be the last time I run into a health care professional that "doesn't get it".

So I started typing this blog the other day and am picking off where I left off with the newest information that I received today. After getting tired of waiting for my oncologist to give me my pathology back I decided to make an appointment with my GP and get them from her which is what I did today. I am not always the most patient of patients. It seems that I was the only one not in the loop and not knowing what was going on. The news was good in that it did come back as metastatic melanoma with clear margins and no involvment of lymph nodes. In fact, they didn't mention anything about lymph nodes on the pathology report so I have no idea what my surgeon was seeing in there. So that is that! Unfortunately, there is no chemotherapy or radiation that they can offer me so that is the end of my treatment for now. I will be seeing him next week so then I can discuss a plan with him. The treatment options are changing frequently with melanoma as they are learning more and more about it and trying different ways to treat it all the time especially recently. Hopefully they will come up with something soon. I've heard of several new therapies which are in clinical trials right now. Right now I am feeling great! Very relieved and happy to be back to my No Evidence of Disease status!!

It's too bad that we just can't seem to stay away from the hospital though. My Mom fell the other day and broke her arm so she has been in the hospital ever since waiting to get in for surgery. We are really hoping and praying that they get her in today. She is on the waiting list right now so whenever one of them has time she will get in. They are controlling her pain well and she has a sweet nurse who is taking really good care of her. Nurses make all the difference in the world! Thank you to all of the wonderful, caring and compassionate nurses out there who do such an amazing job and don't get the recoginition they so deserve.

So, hopefully things calm down around here so that we can have a nice, peaceful Christmas. Hope everyone is enjoying the holidays so far and taking time to enjoy the small things.

1 comment:

  1. I like your comment about nurses. Good nurses make such a difference - they treat you like a person instead of an object or a chore; they smile; they seem happy to see you; they find a mobile laptop that you can use while stuck in the hospital endlessly; they walk with you up and down halls while you hold onto your IV; and they listen. Almost all my nurses were great.