Archive for Ostomy

Today is day 2 of a 10 day water only fast

By Crystal Heimgartner · Comments (2)
Thursday, July 8th, 2010

Today is day 2 of a 10 day water only fast. People keep saying how hard that must be and how strong I am. All I can say is fasting is no where as hard as the chemo I was on. I felt weak and sick and all of that on chemo for a lot longer than 10 days. I’m not kidding myself that this won’t test me physically and emotionally however. Mark wants me to spend this time really thinking about how much time I spend thinking, directly or indirectly, on having cancer and what I am going to do with that time once I don’t have to have appointments and tumors and ostomys to think about. I have thought about that some and the first 2 things that have come to mind are building my photography business with Gary and writing a book. I have never wanted to write a book but for some reason I feel compelled to tell the story of ovarian cancer. I was watching TLC yesterday and a woman’s Dr thought she had ovarian cancer but instead she was pregnant and didn’t know it. The statement that really caught my attention was :

Cancer of the ovaries is the most deadly form of female reproductive cancer. By the time its detected its usually too late to be effectively treated.

I have heard that statement in one form or another for the last 10 months and it makes me crazy. Not only is it treatable it can be detected if there was more awareness for it. All we ever hear about breast cancer. i have nothing against breast cancer but why are they the only ones getting attention? All cancer is hard and deserves awareness and attention so my goal is to get some more awareness and options out to those who need to know. Also I would like to let people know about the options there are in the holistic realm as well. I want to talk about the chemicals and junk in our food and how it plays a factor in our health. I haven’t really thought it through a lot on how I want to go about it exactly but it something I am seriously considering.

I am still thinking through other options as well but I am excited at the thought of doing something besides thinking about being sick :)

I’m 2 days into this fast and I’ve already lost 3 lbs. I find it kind of funny honestly. At least I can wear some of the clothes that I don’t usually get to during this time when I’m not worried about the ostomy. jeans and swim suits. wooo hoo. I have had to adjust my wardrobe so much over the last 10 months but I feel better and better about it all the time. I do miss jeans however. SOON….

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Starfish

By Crystal Heimgartner · Comments (0)
Tuesday, June 8th, 2010

The girls are really into “how many day till…(the next thing we have to look forward to)” So today on the way to school Rilynn says to me ” Mommy, how many days until you’re done with this Chemo and Cancer thing?” I kind of smiled and said “I’m not sure, but I’m fighting as hard as I can.” She replied with “I know mom, I just wish I knew how many more days till it was over…” I said “Me too babe, me too.”

She is such a smart little girl and it hurts to know that those thoughts even cross her mind, but I know she will be strong and brave because of all of this. I know that I am doing all I can to make a difference in their lives and their perspective on life. As Darick and I thought about how to spend our tax money. We discussed buying a few things for the house or finding something to buy that we’ve been eyeing like most people do with theirs but we decided that we want to build memories with our kids. Tomorrow isn’t promised to any of us so we might as well take advantage of the time we have. We have decided to use it for our family trip. We go to Lahonton every year and have decided to take a couple extra days and drive the remaining 8 hrs to Disney. We’re taking the camper to make it cheaper and easier for me to have my food and ostomy supplies. We are all really excited and anxious. My friend Amber sent me this today and it really touched me. I look at my kids as the starfish.

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.
One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.
As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean. He came closer still and called out “Good morning! May I ask what it is that you are doing?” The young man paused, looked up, and replied “Throwing starfish into the ocean.” “I must ask, then, why are you throwing starfish into the ocean?” asked the somewhat startled wise man. To this, the young man replied, “The sun is up and the tide is going out. If I don’t throw them in, they’ll die.” Upon hearing this, the wise man commented, “But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can’t possibly make a difference!”
At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, “I made a difference to that one!”

Today I went to see Mark since I have still been having dizzy spells and problems with my vision and energy. He did some tests and told me that I have some adrenal problems and a problem with my cerebellum. Stupid cancer, it has caused so many problems. He’s not concerned about it. He just changed some of my pills around and told me to check in on Thursday to see if it has improved. He also told me to plan on a 2 week fast when we get back from vacation. Ugh I hate fasting, but he says after the first 4 days it gets better. He says no stimulation during that time so I’m not sure I will even be journalling. I get frustrated at times because I look normal but I still don’t feel “normal.” I have some really good days and some where I don’t get dressed or get anything done. I know people often forget I am sick because when they see me out it is usually a “good” day and I look and feel pretty good. I can’t wait for a day when all I have is Good days, or at least mostly good days :)

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Opening up about how it really feels

By Crystal Heimgartner · Comments (1)
Wednesday, May 26th, 2010

On Monday I woke up bright and early after 4 days of fasting and headed to Boise for a scan. I then went and had some lunch with my girl Jenna before heading back to see Dr Perez(my surgeon) He did a pap and an exam and then gave me the news I dreaded most. He said “I can’t do the surgery.” He said that there is a rock hard mass at the top of the vaginal wall and it is too close to the colon to be able to do the surgery. He requested that I go back on chemo and see if we can get it to “soften up.” He told me that he believed I had a good reaction the the Gemzar treatment and that he would recommend we try that again. I told him that I couldn’t walk, that’s not a good reaction and that my oncologist told me that if I went back on chemo I would have to stay down there. Not only do I not want to live in a Boise hospital I don’t believe it was working. I told him that I believe in what I am doing and he asked me to schedule with my oncologist anyway. I felt hot tears running down my face and was in kind of a state of shock I think. Dr. Perez and Martha sat there with me as I cried and explained how I felt. They were kind but they can not truly know how it feels to not be able to wear jeans or a swim suit. How it feels to not be able to work or go to church because it’s too quiet and what if it makes noise always in your thoughts. They can’t know how it feels to not want your husband to look at you. They tried to soothe me and I left there feeling a little hopeless. As I walked to my car I kind of felt like I was in a tunnel and there weren’t even tears. I was glad I was alone because I am such a private person and I needed that time to gather myself and to only care about my emotions and nobody elses. I called Mark and he was kind as usual and told me that he believed that a hard mass is good meaning that it was calcifying and that it then starts to deteriorate. He is kind and even though he doesn’t know how I feel he tries to reassure me the best he can.

I text Jenna and we decided that a relaxing pedicure would be a good option so we headed to the mall for some foot rubs. It was nice to get to relax and feel spoiled. I haven’t spoiled myself in a long time and I found a couple cute new dresses for summer(if it ever comes) that made me feel a little better about hiding my ostomy. My first thought was to go home and have a raging angry fit on my closet. I get tired of looking at the clothes in my closet that I can’t wear but I decided that wouldn’t really make me feel better so finding something cute to wear might :) On my way to Ross I got a call from Marika. Despite her rough day(she was the hospital with a fever) she was a comfort to me. We talked as only cancer patients can talk to each other. We talked about our body’s, how we felt unattractive and how the emotional toll takes over you some times. She is kind and loving and I am so grateful for her. I had lots of shopping to do and stops to make so when I finally headed for home after a LONG day at 10 pm I had a melt down. Something that I don’t think I have ever really let happen in my life. I was alone, had some great music going and I just sobbed and cried out to God. I yelled and let myself be REALLY angry for the first time that I can remember and then as quickly as it started it was over. The tears were dry and the redness left my face and once again I was in a state of numbness almost. I know that there is nothing I can do to change this right now and all I can do is keep working on me. I realize that I can live like this for now. There is no threat to my life, my kidneys are functioning and my bowl blockage is non existent. The greatest hurdle in my life is this ostomy and I can’t do the surgery myself so I better just figure out more ways to get around it for the time being. I don’t have to be happy about it, I just have to accepting of it for now.

I’m headed in today to go over my scan with Mark but he says there is no growth and that in it’s self is good news. There was a time when the growth was expected to take over my system and end my life so this is GOOD news. I need to just keep plugging along and enjoying the moments I have. Rilynn and I have a hockey game and on the ice is one place where what I have under my gear doesn’t matter. I wish I could change in the locker room like “normal” people but I can make due…I don’t have a choice :)

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My CA-125 numbers are up just slightly, but not enough to do Chemo

By Crystal Heimgartner · Comments (3)
Friday, May 7th, 2010

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!

By Crystal Heimgartner · Comments (0)
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.

By Crystal Heimgartner · Comments (0)
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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I am hoping that I will have my reversal soon

By Crystal Heimgartner · Comments (0)
Tuesday, April 20th, 2010

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.

By Crystal Heimgartner · Comments (2)
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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5 months ago a Dr. told me that I needed to say my goodbyes

By Crystal Heimgartner · Comments (4)
Sunday, April 11th, 2010

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

By Crystal Heimgartner · Comments (3)
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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