Archive for Ostomy – Page 2

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.

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I am ready for some sunshine!

Saturday, May 1st, 2010

Busy days help keep me distracted from the gloomy weather and ominous decisions that are coming soon.  It has been snowing for days and it is now May.  I am ready for some sunshine!

I see the colorectal surgeon on Tuesday.  I will be praying desperately that he will say that my ostomy is reversible.

I am doing my best to embrace the ostomy for the benefits of it but at the same time struggle desperately to want to be able to wear jeans or a swim suit especially with summer coming.  It has been nearly the hardest part of this whole journey.

I also just had to get on Thyroid meds because my thyroid has decided to go a little crazy.  If it’s not one problem it’s the next.  At least this one is a bio identical instead of a pharmaceutical and it isn’t horribly expensive.

I have had several very kind donations lately.  A couple boxes of ostomy bags and one of the purses sold on ebay!  Thanks to all who have done so much.  Hopefully this ostomy expense will be gone soon and that will help tremendously.

I’m spending today cleaning our house and getting ready to do some hair for prom.  I love to do formal hair and makeup! Should be fun.

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I got a hair cut today.

Wednesday, April 21st, 2010

Today’s a little gloomy out.  I got a hair cut today.  It always is nice to get freshened up.  I spent a large portion of the day rearranging the girls rooms and going through clothes. I bought another dresser now that their clothes are bigger they can’t share a dresser very well any more.  I got rid of everything that didn’t fit and took inventory of what they had.  They don’t have a lot of summer stuff.  Mekaty more than Rilynn as she can take the hand me downs but they are lucky little girls.  We are a blessed family.  Tonight is the last night of Judo so that will make it a little easier on me not rushing back and forth so much.  I am really enjoying watching them get into sports though. I am looking forward to my Dr apt next week.  I feel confident that things will still be as planned. It’s kind of funny to talk about praying for surgery.  Usually people pray not to have to have surgery.  That’s my life, I’m always the exception to the rule.

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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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My expenses are up but so are my spirits.

Tuesday, April 13th, 2010

Busy Busy these days. I am so grateful to be able to not only function but be a pretty good mom. We have a lot of activities right now with Hockey, Judo and school. I am also trying to work some. Gary and I have had a few photo gigs here and there and we have the skate by the lake this coming weekend. I feel a little stressed because I have lunch dates, work and practices scheduled all week and I just found out that I now have company coming for the weekend. Mark just told me today that I need to rest :) He is afraid I am overdoing it a little but I lay around when I can.

I am feeling more confident the last few days that Dr Perez will be ready to reverse my ostomy. For some reason I really think it might be “time.” I sure hope so anyway. I am not looking forward to the surgery its self but I am excited for the outcome. I have a friend who did a brief little interview on me and her and another friend will be posting it on a website called cowgirl clippings. It is a Christian website for cowgirls with lots of other cute little stories etc… It should be posted by Thursday I believe. You can view it at cowgirlclippings.com

My expenses are up but so are my spirits. I just started drinking something called Kombucha everyday. It is a fermented Chinese tea. I told a friend about it and she tried it and cleverly asked me today if it is an acquired taste lol. I don’t mind it now and the grape is my favorite and it seems to be helpful to my system. it’s kind of spendy but I don’t stress over those details because Crystal’s Corner has been such a gift. I can’t explain the gratefulness I feel to not have to stress to have what I need. Hopefully $400 a month will be eliminated soon when he reverses this ostomy! That will be one of the best days of my life.

It’s funny to me that people seem to not know who I am anymore. So many people introduce themselves to me like they have never met me before and then when they realize who I am the say “Are you Crystal?” or “I didn’t recognize you with hair.” I love it. it’s kind of like reinventing yourself everyday.

Rilynn is loving Hockey and now she is doing Judo too. She looks so cute in her uniforms. I love being busy and it is so great to be here to witness all the milestones in the girls’ lives. They are so encouraging to me everyday.

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Today has been pretty good. I am so aware of the good things that are happening in my life. 5 months ago a Dr. told me that I needed to say my goodbyes and spend the next few months with my kids because in 4 or 5 months I wasn’t going to be able to. Today I am cleaning my house and planning for the week ahead. It entails cleaning, cooking, working out, skating and taking my kids to many of their activities. I am so grateful to be able to not only survive the last few months but to thrive. I am also so grateful for all of the people who have blessed my life during the last year. I met a girl at hockey this last week and she said “Wait!” ” You’re Crystal???” “I pray for you everyday with my class at the private school.” I am so grateful for all the thoughts and prayers I receive everyday. She also confided in me the next day that she has thyroid cancer and has been putting off doing her treatment because she didn’t feel right about it. I encouraged her to talk to my Dr and see what the other options are. She had lots of questions and seemed encouraged. From what I can tell she is an amazing girl and maybe we will walk through this journey in some capacity together.

I meet with my surgeon yet again on the 27th. In someways I feel confident that he will be ready to reverse my ostomy but at the same time I am slightly afraid to believe it because I don’t want to be let down. I’ll know on the 27th, so only a few days to go.

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It’s been a whirl wind of days

Thursday, February 25th, 2010

It’s been a whirl wind of days. Monday I had a CT and met with my oncologist. He said that my Cat scan looked the same as it did in October which in it’s own way is good. That means at least its not growing!
Then Tuesday I saw my surgeon hoping desperately for him to say that everything was ready to reverse my ostomy. He palpated my abdomen and said “Crystal this is soft, like unbelievably soft.” He seemed quite surprised. After an internal exam he let me get dressed and then came in to talk to me. He said that he thought that my CT actually looked better but that I still had a 4cm mass at the top of the rectal wall so he wanted to wait two more months to see if we could get them to shrink some more. He said “You can do anything for 2 months, be patient.” I told him that I have been patient. He told me 10 weeks and its been 7 months. I think that’s pretty patient. I would be lying if I said that I wasn’t pretty disappointed but I am doing my best to live with it and be content to wait. In working with Mark I have realized how hard I am on myself and other people and I know that this will only soften me towards other peoples “defects.” I feel like I am going the right direction and believe my day is coming.
There is a fundraiser this weekend for me at crossfit asylum. It is being put on my one of my nurses. She is a real sweet heart and I am SO grateful for all the support I have continued to receive through out this journey. I receive so much support emotionally and financially. Every time I go to buy ostomy supplies at $400 a month I feel overwhelmed with gratefulness for the help I have had. This journey is far from over but I know with all of you I can do it.

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I got my kidney stints out on Thursday

Sunday, February 14th, 2010

I got my kidney stints out on Thursday. It was a horrible experience getting them out but I am glad to be free of them. I will have my blood drawn on Tuesday to ensure that my kidneys are functioning ok without them. There is a chance that I will have them put back in but I am hopeful that they’re out of my life for good.

I have a CT on Monday the 22nd and see my surgeon on the 23rd to see what the next step is for me. I am hopeful that he will reverse my ostomy so that I can start living a “normal” life again.

I had a good weekend. I went to my brothers last basketball game on Friday. Saturday I took my girls skiing and went to a hockey game with Darick. Today we got Darick all packed to o north for work again and my mom is here to spend the night. She and I are taking the girls to the hockey game tonight. Idaho vs Fresno. We beat them in overtime last night. It was a great game. Just happy to be alive and have a few great Valentines in my life.

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I got to hold my niece Kali again yesterday

Monday, January 25th, 2010

I got to hold my niece Kali again yesterday. She is so sweet and such a good baby. Holding her last night I started thinking about how I will never have another baby. I was 99 percent sure that I didn’t want anymore but it’s a weird feeling to have the choice taken away from you. There were days when I wondered if maybe I had my kids too young but now I am so grateful that I had them when I did. They are the joy in my days and the best reason I have to fight.

Often I ask myself why me? I know there is a reason that I am experiencing this. I have had talks with other patients struggling with their ostomys and recently more and more people contact me about what I am doing for treatment and want to talk about my symptoms and alternative treatments. I try to be an open book and use my story to help others.

Please join in our fundraising efforts so that we can all be in Crystal’s corner as she battles her way to a victory. Please Donate Today

Let your haters be your motivators

Monday, January 4th, 2010

I called my surgeons office today to see what he would require to reverse my ostomy. When his assistant got back to me she said that he wanted my numbers to be below 35 to help ensure that it would be effective. It felt like a kick in the stomach at first, 35! that seems so far away, but then I decided that it was just more motivation to try harder to get there. Be extra strict on my diet and take every supplement the way I am supposed to. Also I WILL do my beam ray and see what happens. Let your haters be your motivators as they say. I’m sure he’s annoyed that I am not doing chemo. Otherwise he would do the surgery. He attempted it when I was 194 but not at 107? Oh well I will get there with or with out him. I want this ostomy gone badly enough to work hard at it. I can’t wait to call him and say 27 :)

Please join in our fundraising efforts so that we can all be in Crystal’s corner as she battles her way to a victory. Please Donate Today