Archive for Hockey

And so it is…

Well after 15 months chemo free and no no growth I had a scan yesterday that didn’t go as I had hoped. The tumors on my vital organs such as liver and lungs haven’t really changed, thank GOD, but the ones in my lower pelvis have shown some advancement. Dr Dan is awesome and has continued to express how impressed and interested he is with my decision to stop chemo and go “natural.” When I came in yesterday he said “so what are you doing? Because you are doing so much better than expected!” I just looked back at your charts and it has been 15 months since we gave you chemo and you have done phenomenally!”
However I have some growth in my pelvis, the concern for the growth is that it could cause a bowel obstruction or problems for my kidneys but that isn’t the case quite yet. Soooooo the next step is for me to either decide to stay on observation and get more regular check ups again or make the move to maybe consider a small dose of chemo. As much as I don’t believe chemo is a great option I find my self slightly fear driven to give it a try. I haven’t decided yet partly because I don’t like to make a decision based on fear. I also have to admit that I knew in my guts that it might go this way. I am very in tune with my body and realized a few weeks ago that I was gaining weight, exhausted all the time, gassy stomach and just felt that something wasn’t quite right. However I wanted to believe it was because I was stressed and playing a lot of hockey. Speaking of hockey, I LOVE it but with a CA 125 count of 200(the highest in a long time) I understand now why I feel like I have to work so hard and then feel so tired afterwards. I love that I feel alive when I play and I also have to think so hard about where to put my feet that I don’t think as much about being “sick”.
I am looking into some other treatment options and have a friend looking at some options as well. I may have to travel to receive treatment but I am willing to find a way to do what it takes.
My friend Marika got into a clinical trial in Boston today! She will begin treatment on the 25th. This is great news as she has been trying to get in since 2009 and hasn’t been able to meet the criteria in the past. Thanks for all the prayers and support for the both of us.

I now live for joy and laughter today

Saturday, January 15th, 2011

I have been really busy the last few days. I’m now playing with 3 hockey teams as if just one wouldn’t be enough, but some where amongst all the hustle and bustle I have found the time to process a few things in my life. I feel an overwhelming need to discover passion and drive and feel the worth that I once felt. I am often told that I have changed peoples lives but somehow I still struggle with worthiness? I know that my story has touched many peoples lives, however my own has been changed the most. I now live for joy and laughter today and not always putting that off until tomorrow.  I now will lay in my bed with my girls on the weekends instead of rushing to get up to make sure the laundry is done and the dishes are clean.  Those things will get done but they are not how I base my worth anymore.  There is so much pressure on us as woman to keep a home, make sure our families needs are met, our bills are paid and somewhere in there have some fun and grow through passion.  In a lot of ways I feel like I have found passion for some new wonderful things and also lost my passion for some things along the way.  One of the first things Mark told me when we started is that nobody who beats cancer is the same on the other side. I would have to agree with that 100% even though I haven’t beat it yet. I will no longer surrender who I am on the inside for what people perceive on the outside.  I will be loved for who I am and not who people hope I could be. I will do my best to love my self with no exception to the imperfections that I see. I will strive to be passionate about the choices I make and love and laugh as often as possible.  I’m not saying that I will be perfect at these things but as I contemplate the new year and where I go from here, this is what I see… A new refreshed me, a lover, a friend, a mother, a daughter, a sister and a woman. A woman beyond expectations and better for it.  I will choose each day to find the joy and the beauty even when its seems buried below a cloud of darkness. I will! I will be stronger everyday and discover who I am each morning.

It’s been a very busy few weeks with some big ups and downs emotionally. Being “sick” and having some emotional and physical hang ups make it hard on relationships.  As I move forward I see some people who want to move forward with me and some who are stuck in the old ways.  I have been working on me for almost a year and a half now and know that I am not the same person I was when this started. Mostly for the better. I am much better at standing my ground and refusing to stay in “this space” however that puts a lot of pressure on those around me to step up who they are as well.  In the last year I have really realized that I have settled a lot in my life and not continued to reach for the things that I really want.  As a parent and a partner I feel like we get stuck in these trends where our wants and needs come last and thus manifest resentment, bad choices and even disease. So as I move forward to heal the emotional triggers to my illness I have to move away from those that refuse to move forward as well.

Also I have been playing hockey despite the fact that I am often very uncomfortable with my ostomy and some of the embarrassing things that come with it.  I have decided to try and go to the tournament despite the fact that I would have to travel and stay with people I don’t really know.  That makes me really put myself out there but I am TRYING! I love sports and hockey is so much fun. I hope to do it for a long time.

Lots to say since my last entry.  It’s been a bit of a emotional roller coast the last few weeks.  I left town on November 4th, exactly 1 year to the day of my second surgery where I was told to tell my girls goodbye and prepare them to expect me to pass with in 4-5 months.  I had a blood draw that morning before the flight and my numbers were back up to 179 but nothing to be too concerned about. I will have labs and a CT in 3 months to see where things stand.  That will be a full 6 months since my last scan and should give us some good indicators of where things are.  It’s kind of crazy that I left 1 year to the day to be with my brother after he had to come to be with me 1 year earlier.  I am so grateful that I am well enough to be a stable functioning family member.  It was an emotional trip and a great time all in one.  We got everything sold or donated and then got him on a flight.  It was a LONG drive back but it was worth it. Then the day after we got home I had to turn right around and take Rilynn back to Boise to the eye therapist.  It was lots of driving and all happened to land on my dads birthday.  He would have been 52 this year.

This week has been super busy! Hockey, figure skating, planning for the bakery and cleaning and unpacking.  Today was a great day.  I met with Mark to discuss the plans for the bakery/cafe and it went really well. I am so excited to get it going and he wants it done ASAP and I am all for that.  I hope I can get the details all together quickly and get the build out done in a manor we can swing. Darick is so busy that I hope he can make some time to get the construction done so that I can get in there but I will be doing the made to order stuff as soon as this coming week and the bakery with in the next couple weeks for sure.  I am exciting about being able to help change peoples lives through food and my story.

Oh my goodness it’s been busy around here. We have been going going going but I am so grateful that my legs are now strong enough to carry me the distance. Tuesday I had an apt with the colorectal surgeon, it was an embarrassing appointment and no matter how many bottoms he’s looked at this is still mine and somehow different. I learned that if the tumors are debulable (removable) then there is a possibility that I can have my ostomy reversed. Ultimately it’s yet to be decided. I have to see if my regular surgeon is willing to do the surgery and that will be based on how the next CT goes. Unfortunately there are so many surgeries for cancer these days that my surgeon was booked until June, however he was able to squeeze me in on the 24th of May. I will have a Cat Scan early that morning and see him at 1 for the results. I am hopeful that there will be significant changes this time and am working to visualize a good outcome. My CA-125 numbers are up just slightly, but not enough to do Chemo my oncologist said. I saw my normal oncologists son this week and I liked him a lot. I’ve seen him twice now when mine has been out of town and am seriously considering switching to him permanently. He’s great, very friendly and seems a little more open to my new method of treatment. He said I wouldn’t do chemo if I was you and that is the first time I have ever heard that from an oncologist. Right now I am being monitored pretty closely and the thyroid seems to be doing better.

On the way to my Dr’s apt Tuesday I called my “chemo buddy” Marika to see how she was I hadn’t heard from her in a while and she had been on my mind a LOT. Once she answered the phone I knew exactly why she hadn’t called. I could “hear” the weakness in her voice and as we talked I learned how rough the last few weeks had actually been. She had been in the hospital on and off for the last 3 weeks and had an allergic reaction to her new chemo. Also she had gotten some devastating news that her liver was in a lot of trouble and other tumors had developed in her lungs and liver as well. Her numbers had jumped dramatically over the period of just one week. We talked about things that only cancer patients can understand and we both ended up in tears. She is an amazing woman and she has been my inspiration and strength many times over this journey! This is her second go with this disease and this was honestly the first time that I had ever seen her this down. It brought back some pretty difficult memories for me of a time when I was in that same place. We both agreed that the phone call was a “God thing” that we both needed. I know that she and I will forever be friends and had we not both been in this journey we would have never met. Mark often tells me to see the good in what has come from this and not the bad and my friendship Marika is one of the best things that has come from my getting sick. There is something special about some one who really “gets it.” I love to call her when I have good news because I know she knows how that really feels and I also know I can call her when I need to be encouraged. I encouraged her to see Dr Mark and yesterday she did. Afterwards we met up for a short visit and I was greeted with the greatest smile and hug that only Marika can give. I could tell that she had seen something new. She told me that she felt much more encouraged and that’s all I want for her. She is trying to get into a clinical trial so we are praying that her liver numbers get better and she regains some strength to continue this journey.

My daughter MeKaty decided that she wanted to do the race for the cure this year so she, Rilynn, my mom and I are all going to do it tomorrow in Boise. We are racing in Marika’s honor and it should be a great day!

Rilynn and I had another hockey game on Wednesday and she scored 3 goals! She was pretty excited. We are really enjoying it.

Last night was Rilynn and I’s first hockey game.  We had a lot of fun.  At first Rilynn did a lot of standing in the middle of the ice but by the end of it she was getting the hang of it a little more.  It’s all parents and kids so it’s pretty fun.  We ended up losing but I scored 2 goals so I was pretty happy about that.  It’s nice to have a little mother daughter time with Rilynn.  She is growing so fast and I am grateful for the time with her.  I think I will take her to stick and puck today to try to get her passing a little and used to having a stick in her hand.  I am hoping that I will have my reversal soon but if so I will probably miss the end of the season.  Even though I am enjoying hockey I would give it up for a reversal any day.

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