Diario de Liza Yore
It been about a year
Escrito el Jan 20, 2014 12:31am por Liam YoreLiza here-
so it has been just over a year since my metastatic disease diagnosis. I recently underwent my routine every 3 month brain MRI, heart echo and full body CT scan. It was great news.
My echo shows that my heart function is up to about 50%. That is actually up 5% and is in the normal zone. This is great because it gives me some wiggle room if and when I need to change my heart meds. I don't know what is responsible for this improvement (time, meds, or my recent work outs ) but it doesn't matter. I will take it.
My brain MRI remains the same as it was just after my treatment with gamma knife and I have no new tumors. This is very very good. There is very little evidence that I even had two brain tumors.
My most recent CT scan came back with these words:
Liver- previously described hepatic nodules are no longer seen. No new lesions identified. Best news ever.
so we are celebrating for now. I will continue on with my current regimen of meds. They have their side effects; my toes will never be the same, I own more hand and foot creams than anybody I know, I have really bad acne and I suffer more from fatigue than I like to admit. But it is all worth it. The drugs are doing their job. I am alive and doing very well one year after the cancer was discovered in my brain and liver. I have done better than the statistics indicated I would. That fact is not lost on me. I will endure all the side effects I have to in order to continue to enjoy life with my family and friends.
Thank you all for your thoughts and prayers. They really mean everything to me. And keep them coming. I am planning on hanging around for a very long time but can use all the well wishes you can give me.
Here is to 2014 and many more years to come
Nothing new really
Escrito el Nov 5, 2013 11:10pm por Liam YoreLiza Here-- long rambling post to follow
It has been a long time since we last updated this page. That is good I guess. I apologize for those of you who might have been worried or who have been wondering how things have been going. There have been quite a few changes in my life the past few months. My health status is not one of those things that has changed so I will start there.
I had my latest brain and full body scans this past month. The great news is that The remaining tumors in my liver are getting so small that they are almost to the point where they are not detectable by medical tests anymore. That is a great thing although it was the source of some internal confusion. My brain scan was also great. I had to have it done after 2 months instead of 3, as there was some fear that one of the previous lesions had grown. The wonderful news for me was that the change was determined to be due to treatment necrosis and not the cancer growing again. I am now back onto a every 3 month monitoring scan schedule. So all that is great news. My cancer is being held at bay and is actually continuing to shrink. I couldn't ask for anything more. I will continue to take the two medicines every day that are working to combat the cancer cells that are living and hiding within me.
Now for the rambling part:
The funny thing about a cancer battle is that even good news can lead to disheartening and confusing feelings. That is where I have been at the past few months. The reality of my cancer battle has really set in. It has been hard for me to embrace the good news as I have been stuck in a place of reflection and realization as to what my life and the life of my family continues to be. Cancer is ever present even, when I am doing well.
I was very confused when my most recent CT scan of my liver came back with a report of the "cancer continuing to shrink." My previous PET scan had read "no evidence of disease", which I naively thought meant it was gone, at least for now. What I was told this past month is that my cancer has become too small to detect on a PET scan, but that it is still there. That was a huge kick in the gut for me. It was a hard dose of reality.
I will never be cancer free. I will always have cancer. I will always be taking medicine to keep it from growing in me again. The reality is slowly sinking in. So even when I get good news, there is always a sense of impending doom. I try to not let that sense rule me, but it is very hard some days. I knew from my initial stage 4 diagnosis that my cancer was not going to be cured, but I guess I was hopeful it would go away at least for a little while. I was scared, angry and sad. It was so overwhelming that I couldn't even think about my future. I couldn't think about the what ifs and how to we prepare for when the cancer can't be treated. I lived day to day and embraced all the little things I had previously not appreciated. I tired to live my life like I did previous to my diagnosis. But one can only pretend for so long. Eventually, one has to deal with their reality. To accept it and to prepare for it. And that is what I am trying to do right now.
The realization that " no evidence of disease" did not mean I was cancer free was a hard one. I had built that phrase up in my head only to find out it didn't really mean what I had pictured. That was Blow # 1. Finding out what "NED" really meant. Blow # 2 was the loss of my mother.
Some of you may already know that I lost my mother to cancer in September. She was a 15 year survivor of a stage 4 metastatic cancer of unknown origin. She wasn't supposed to live past 6 weeks let alone 15 years. She was my light, my sense of hope that one can survive the dreaded stage 4 cancer. And I lost her; she lost her battle. She went from being on a family vacation with us to being gone in 6 weeks. It was very fast and I had no idea it was coming. Losing my mom is indescribable. And to lose my beacon of hope, well I have no words. It put me in a very dark place.
Cancer took my mom in 6 weeks after 15 years. Watching her die was like looking into a mirror for me. It was too much at times. It made me realize that I can't plan on anything. I can't plan for the future. My cancer might be stable one day and the very next, it can begin to grow again. There are no answers now, no magic medicines. I will be on medicine to try and keep ahead of the cancer for the rest of my life. And one day, the medicine I am on will stop working. I will move on to another and then another. We will continue this dance until I run out options. And the truth is no one knows when this will be. It could be 15 years, it could be 6 weeks. That understanding makes it hard for me to see my future. I don't know what it holds.
I realize no one knows what their future holds but this is different. Yes I could get killed in a car crash tomorrow but that doesn't keep me from getting in my car. Not knowing however, if my medicine will be working next year, does affect my behavior. For instance, planning a big family vacation. I want to go on that vacation in December of next year. That would have been ideal. But the uncertainty of my future is preventing me from planning a family vacation at that time. I want to go on that vacation and so I can't put it off. I can't take for granted that I will be here in December of next year. That is the awareness is that my mom's death brought back to me; I can't take time for granted. My time here with my family is not guaranteed. Its like an alarm clock that is set to go off, but you don't know when.
Living with stage 4 cancer is different. Every day, no matter how well you are doing, you always fear you won't be here tomorrow. You fear that today will be that day you hear those dreaded words "there is nothing more we can do". You fear leaving your loved ones behind.
I have gotten very good at living with this fear, or I should probably say avoiding acknowledging it.But after cleaning out my mother house, I have begun to accept this reality again. I have begun to plan for the unthinkable. That is one gift I can give my family, I can help prepare them for life without me. A somber thought and one we don't talk about much. That is where I am at. Preparing for the future. Learning to live with and acknowledge the ugly reality of stage 4 cancer. I am slowly coming out of my funk. We are planning for life without me as painful as that is. I am making that bucket list and trying to cross out items I want to do with my family. I am living life. I am accepting the things I could not a year ago. I am slowly merging the dark reality with the light. I am learning to live with cancer again. This time, I am not denying the ugly nature of my diagnosis. I am facing the reality as hard as it may be and remodeling my plans. There is plenty of joy and happiness to be had. There are plenty of celebrations. I just might have to make those things happen sooner than later.
Escrito el Jul 18, 2013 2:42am por Liam Yore
This video spoke to me
Its a pretty good summary of what my life is like- day to day, scan to scan. I have good days and bad days but I cherish everyone of them.
Not much to report here except that we decided to keep on my current medication through the end of summer. Then we will think about dropping one of them, most likely the Xeloda. I have side effects that some people probably would not tolerate on a day to day basis. I tolerate them because they give me peace of mind. The drugs have done their job and are keeping my disease at bay. That makes all the diarrhea, nausea, itching, skin peeling, fatigue worth it.
I am due for my next brain scan in early August and will repeat a full body CT and bone scan sometime in September. I will also have another echocardiogram somewhere in between. I live on my 21 day cycles now 14 days on Xeloda and 7 days off. My body has a pretty consistent reaction to the Xeloda now and I can reliably say I am fine until day 9 or 10. Then, I just gut out days 10-14 until I get my week off to recover. All very doable. My family is getting accustomed to my medical rhythms as well. Hoping that i can continue on these meds for a while, but like I said, we will reevaluate in the fall.
Enjoying the summer off with the kids. We are keeping very busy.
Wishing everyone well.