Archive for chemo

I have decided that I WILL write a book to share my story

By Crystal Heimgartner · Comments (1)
Thursday, July 22nd, 2010

I’m sitting in the airport waiting to board my flight and I feel so excited to get some rest and sister time in. I have never been away from my kids for this long but I know it will be really good for all of us. Yesterday was an exciting busy day. It started with one of my best friends and biggest supporters Jenna having shoulder surgery. She did really well despite the fact that she had a really unusual tear. The Dr said in the 10 years he’s been doing that surgery he’s never seen one like it but feels confident that they got a good repair. I was really glad that I got to be there for her as she has been by my side through my entire journey. She and I had lunch within hrs of hearing that something was desperately wrong with my body, she took me to my CT, let me stay with her before, after and during all of my treatments and procedures and was by my side every chance she had. She is a real gem and was so funny and brave through out it all.

While she was in surgery I went over to the chemo suit and had my port flushed. Every time I walk in there I feel very overwhelmed with emotion. I notice the people who have all their hair and you can tell are getting ready to “start” this journey. They are unsure of what to expect and some of them look defeated already but my favorite are the ones who look so determined. I only hope that fire and fight don’t fade as the effects get more and more uncomfortable. There are those of us with a variety of short hair styles anxiously waiting to see if we are maintaining those oh so important numbers and praying that we never have to go back to the beginning ever again. The hardest ones to see are those who are bald, quietly covering their bald bodies with fake eyelashes, painted on brows and the little scarves and hats that mostly keep your head warm and provide you a little security to feeling like people don’t know how you look under there. I wish there was a way for me to tell everyone how they can make a few lifestyle changes, whether they stay on chemo or not, that could dramatically affect the out come of their lives. It’s for that reason that I have decided that I WILL write a book to share my story. There are many details that I still need to work out about how I intend to go about it but last night I met with my uncle Marty’s girl friend who a published author and an English professor. She told me that she would be glad to help me and connect me with her publisher and other connections as I progress. I am very excited about where this will lead. I also met with another woman, who I met through facebook, to discuss our plan to start a cancer clothing line for people with scars, appliances and other medical “defects” A lot of exciting stuff to come. I am excited to start filling my thoughts with all of this new passion instead of cancer. Those days are coming. For now..off to Florida to welcome a new baby niece into the world and nurture a relationship with a sister :)

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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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I am sad right now

By Crystal Heimgartner · Comments (3)
Thursday, May 27th, 2010

I met with Mark yesterday and we went over my scan and he said there is no growth. He doesn’t understand why they are so upset, it’s not like new tumors are exploding all over my body. He sees no need to go bak on chemo. He says once it’s been a year we are going to get a lot more aggressive with my treatment with some extensive fasts ect. I believe in what we are doing and I am active where on chemo I wasn’t and that means a lot to me.

I am sad right now. I just read a caring bridge site for a little girl that I met in the waiting room for CT’s. She is 7 yrs old and she has been battling for a few years now. First of all it was so sad to see this brave little girl the same age as one of my daughters fighting for her life when I know how hard it is on me as a grown person. But when I started reading her journal and saw that her doctors are worried about her weight loss and have advised them to “fatten her up” so she is eating ice cream and high calorie stuff. I wish people knew how badly sugar and milk ect are for growing tumors! Why aren’t Dr’s telling people??? I have gotten so passionate about this stuff but i don’t want to spew it all over people that I don’t know. I wish I could tell everyone how important not eating like crap matters. Every time I walk into the “chemo suite” to get my blood drawn and see the multiple jars of candy and the ladies with cookies walking around it makes me want to scream. The lady with the cookies is just trying to make people cheerful and I get that but when you have cancer a smile and a kind word are a lot more beneficial than cookies and treats.

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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 hoping for the best.

By Crystal Heimgartner · Comments (0)
Thursday, February 4th, 2010

Today was long and tiring but good I think. I walked into the hospital today and was surrounded by all the cancer patients all I could think is how they don’t know any better. I had my blood draw and should have my results tomorrow. My oncologist is so insistent that it has to be the chemo that is helping even though I haven’t had chemo in almost three months. He tried to bully me a little bit into thinking what I am doing could not be working. We’ll see when my numbers come back how things are working. I am hoping for the best.

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A lot on my mind the last few days

By Crystal Heimgartner · Comments (8)
Monday, January 11th, 2010

A lot on my mind the last few days. I went in and had a check up with my oncologist and had my blood drawn and my port flushed on Thursday. Dr. Zukerman seemed surprised by my decision to continue to stay off of the chemo and even more surprised and how good my white blood cells and anemia looked. He felt my abdomen for longer than usual and then said “This actually feels really good, can you bring in all the stuff that you are taking? I am very interested.” I was glad to hear that but my holistic Dr. had told me to be prepared for ups and downs and not to be discouraged if it came back slightly higher so when they called me Friday and told me it had dropped to 67 I almost exploded! I was shaking and so excited. Tina and Sunnie were doing cartwheels and my dad held my hand for a while as we took it all in. It was great to have him there when I got the news. The whole trip over to Ephrata (moses lake area) was great. It was just he and I and we haven’t gotten to do that in such a long time. I was so grateful for the quality time and was honored when he said that he was very proud of how I have handled this situation. As a little girl I longed for his approval and couldn’t have gotten it at a better time.

We got to Ephrata around dinner time on Friday and enjoyed a nice dinner with the Munro family and attended the funeral for Sage on Saturday. I feel so deeply for his son as I understand how it is to lose your dad as a kid and to have so many questions. It was overall a very nice trip and Fawn came home with us last night.

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Let your haters be your motivators

By Crystal Heimgartner · Comments (7)
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 :)

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I am glad the holistic regimen appears to be having some effect

By Crystal Heimgartner · Comments (6)
Monday, December 21st, 2009

We just got home from Hawaii and it was an amazing trip! We snorkeled, snuba’d, saw whales and dolphins and ate amazing fresh foods. Because of my anemia, lack of hair and weight loss I am always cold so it was so nice to feel warm for a while. The condo that Dr. Gardner donated was beautiful and sat right on the beach with many pools and activities. We can’t thank him enough for his generosity and all the others who did the fundraiser for our family trip. It was so great to not feel sick and be able to enjoy my kids and be active. I was still tired frequently but had much more energy than when I was in full blown chemo. I am so glad that the holistic stuff appears to be having some effect. I have been seeing Mark quite a bit and he has done urine samples, bloodwork and saliva testing and put together a very strict diet for me. It is very limited and difficult but I am trying! I can’t have any gluten grains, flour, sugar, vinegar, tomatoes, pork, milk etc… It makes life very difficult. I eat a lot of veggies, red potatoes and organic EVERYTHING if I can help it. It is very expensive but my cancer cell counts have dropped over 120 points in the last 5 weeks. This is better than the chemo has done alone and I am so grateful.

I had to go get ostomy supplies today and they are SO expensive. After a 20% discount they were still $230 for 10 wafers and 60 pouches. I’ll be lucky if they last me 3-4 weeks. Its days like this that I am so grateful for all the donors! Each time I go to the pharmacy or to get ostomy supplies I am so grateful that I don’t have to think this money is coming out of groceries or Christmas for my kids.

Speaking of Christmas I need to finish my shopping! I am hoping to go down with my friend Tina tomorrow and get it all finished up. Rilynn told Santa that she wants a violin and Mekaty wants reindeer horns. I don’t know that Aanta will be finding either of those :) I think he will find something that they will both like. Time to go unpack and put our summer stuff back in their boxes for a while…

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