Help Crystal Fight Ovarian Cancer » Ostomy

Dr. Report 1/12/2012

Crystal Fernandez-Seid — Fri, 13 Jan 2012 16:13:12 +0000

Well I am back at it after yesterdays appointment with Dr. Zuckerman. I’m not going to lie, I was pretty worried because the tumor on my belly has grown so rapidly and I thought maybe everything inside was growing at the same pace. I had prepared myself to hear the words, “Things have really grown Crystal, it’s time to try some chemo.” I had also wondered how Joel would respond if the news wasn’t so great even though he is always so strong for me. In walked Dr. Z and imagine my surprise when the first thing he said was “Well everything on your scan looks stable except one area that has grown rapidly, is your ostomy in the lower left quadrant?” Of course I replied “yes” and he said that he had spoken to Dr. Perez who had also seen the scan and was willing to take a look at the tumor and see if he could remove it. He wasn’t confident he could get the whole thing but he thinks he can at least remove the portion that is above the skin that causes me the pain and ugliness. I felt both relieved and nervous about the procedure. After we had that out of the way we began our talk about my trip to Seattle. He sounded open about my trip and I began to share with him the ideas that Dr. Chen in Seattle had suggested. I mentioned HYPAC and he was blown away, he said, “That is a huge surgery and very invasive!” I agreed that would be later down the road. I told him of the plan of low dose Carbo/Taxol, he had some of the same concerns as I did with the idea that I had tried this type of chemo before without measurable success. I had to remind myself that during that time I was also being told to eat ice cream and cheese burgers because I was losing too much weight and doing it in high dose every 3 weeks. I do have some of those same fears of trying it and torturing myself if it isn’t going to make a difference, however I have to be confident that Dr. Chen sees much more cases of this than my small story. Anyway Dr. Z said that weekly low dose is in many trials in Japan right now and they are seeing some result but it’s hard to say yet if the long term results will be enough to make it worth it. He seemed on board to consider following the Seattle protocol, then I handed him the sheet with the dosage on it. His response was wide eyed. He said “Wow, these are INCREDIBLY low dose, like almost homeopathic doses.” He said that he had concerns that this may not be strong enough doses to do anything. My response to that was “I would like to try it and if we don’t get the results we are hoping for than we can always try a different approach.” He seemed ok with that and said “It sure can’t hurt and I know you will be able to tolerate it.” He did say that he would like to consider upping the dose as time went on and I said we could cross that bridge wen we get there. Then I moved on to mentioned High dose Vitamin C and Iscador he wasn’t impressed. He told me that it sure wouldn’t hurt anything. I then asked him why he didn’t do it and he boldly responded with “Because I don’t believe in it. I am proudly a part of the medical community, that’s what I wanted and why I chose to go to medical school. However I am also open minded enough to say that we might be wrong. You are the proof of that. You have been off chemo for over 2 years and you are alive, I can’t explain that.” In my head I kind of smiled and thought “Not only alive, but stable.” I was impressed with his ability to be so honest. I can appreciate the fact that he can look me in the eye and say, I’m sorry that’s just not my thing, but I am not saying you couldn’t or shouldn’t try it. I appreciated the honesty but know in my heart that he is missing out on some amazing opportunities to impact peoples lives with more than just painful drugs. With all of that said he told me to see Dr. Perez next week and schedule surgery(if I’m going to have it) before I start any kind of treatment. Joel and I left there both quiet and holding hands. Once we got outside I looked at him and said “Stable!” I could feel my whole body drop from this tight, high place into the earth below me. He grabbed me and squeezed me tight. I could tell he was so relieved to hear it too and I was so glad he was there with me. We walked to the car, both with big smiles on our faces.

We had a few errands to do, called the mom squads and then enjoyed an amazing lunch with Mark G. and Stephanie of Aqua Cuisine. It is always good to see Mark as he is such a light. He always helps me forget my situation for just a minute and LAUGH. We couldn’t stay long as we had a couple quick stops to make in Garden valley before heading back to McCall for a date. Joel had set up appointments with a couple of fire crews in Garden Valley and wanted to touch base face to face before the openings closed. He is hopeful that maybe he can be closer this summer and that would be an amazing opportunity. It was a random find on the internet that he even knew of the opening. I am praying that this will work out so that he can be closer to us this summer. The meeting seemed to go well and we rushed back to McCall a few minutes late for our massages at Shore Lodge. I thought a nice relaxing massage and to lounge in the pool area would be a nice end to a hectic day. We got settled quickly into our massage tables and our therapist started in. Joel got a very nice relaxing massage but I got Judy(who I wanted because she is very healing by reputation) she started in and warned me right away that she wasn’t going to give me “vintage” massage that I needed deep tissue and lots of release. I was up for anything and she began the deepest, most intense massage I have ever had. It was amazing and powerful and PAINFUL at times. I found myself having to breathe through the intense moments and then feeling the release. She worked on my scar tissue and released my hips and arms, neck and shoulders. It was different than anything I had ever experienced. She is an incredible, classy, talented therapist but I will know next time that it is not necessarily “relaxing.” She pulled back the sheets to massage my stomach, which I had never had done before. At first I could feel my self tense up because I knew she was going to see my scar and my ostomy but she put me at such ease the whole time. She asked if she needed to avoid “it” and asked what it was. When I told her it was a colostomy she didn’t seem bothered in the slightest. I told her that it was fine and she ran her hot stones and healing hands all over my belly and scar. I felt free for the first time with a stranger touching my scar. She asked if I had a pacemaker when she felt my port and I explained that it was a porta-cath and had been there for over 2 years and wasn’t tender. She told me that I needed to release the reigns a bit and trust God more. She said my tension was binding up my arms. I felt the tears start to fall from my eyes. How does this woman who doesn’t know me know that about me? She also told me that “It is hard to release the tension when you have been dealt such a crappy hand of poker.” She warned me that I might be a bit sore the next few days but that it would settle and I would feel better. She also cleansed my ora which I have never had done before. We left the room and sat relaxing in the pool room for another hour or so and then Joel went to steam and I read my devotionals for a bit longer and relaxed. It was just what I needed. I read about fear and healing mostly. We were finally ready to go and Joel treated me to a wonderful sushi dinner before we headed home to enjoy our last night together before he headed back to Whitefhish. Joel worked on his resume’ and I fell asleep in front of the fire. I love laying there, feeling the warmth on my bones. Joel left this morning and I am not exactly sure of the next time I will see him. I guess it depends on what happens with surgery/treatment but I would like to try to get back up there in February. I can’t imagine my life without him. He keeps me accountable and focused.

Today I feel a little anxious about the possible surgery. I want this thing removed but I have questions like, How long will I be out of work, do I have enough PTO? and is it going to be miserable or just a small surgery?, could he maybe hook things back up while he’s inside there??? I would love that more than anything but am afraid to get my hopes up. I’m trying to take one day at a time and as my cousin Michelle’s painting says…Just Breathe…

So Much To Say

Crystal Fernandez-Seid — Sun, 18 Dec 2011 16:24:03 +0000

I’m back from Seattle. It was a whirl wind trip. Boise to Seattle via San Fransisco but it was cheap so I can’t really complain. I was thinking this trip that I should invest in a digital recorder of some kind. I have many thoughts going through my head on a daily basis that should in someway be Incorporated in “my book” if I ever write it. I was packed and ready as I headed to work Wednesday morning. It was the day that seemed to take FOREVER to end. Some days those 8 hours feel like 20 don’t they? So finally 5 o’clock came and I headed for my mom’s house. I don’t get to see her a lot and since I won’t be around for Christmas it was important that I get in a visit. We met for dinner at a local Mexican restaurant where the food was great and the service was terrible. The one good thing about not having good service is that it frees you up to visit uninterrupted. i try to see the positive even though I like good service and have worked in service most of my life. Anyway, we finally finished up and headed home. I got kind of settled and we began to watch “Crazy, Sexy Cancer” a documentary I have wanted to see for a while now. My mom being sweet and sensitive kept saying “If this bothers you we don’t have to watch it.” It didn’t bother me and I really enjoyed the video. I could relate to so many of the highs and lows. One of the things that impacted me a lot was when she was on her way back from the Dr. apt(in the back seat) and she was discussing how they say things like “stable,” “slow-growing” ect and how that isn’t really settling. She made the statement “You feel like you are staring down the barrel of a gun wondering how many bullets are inside.” I can relate to that so much. Even though I feel pretty good and most days I am strong, I have those thoughts of “Could this be the one that takes me down?” or sometimes I think “What if what I am doing isn’t enough.” The documentary was really good and I really enjoyed her humor and true self shining through. It was a nice evening and I found myself dozing off on the couch and headed to bed with my mom. I woke up and began getting ready. My mom stayed home for a while extra to visit with me while I was getting around. She is always passionate and encouraging. I finally found myself in some kind of order and off I went to Boise. I made a few quick stops playing Santa and then finally made it to Norco to get my ostomy supplies before running down to MSTI to get my port flushed. It’s never just a relaxing day for me after my port flush I met uncle Marty for a quick bowl of soup and off the airport I went. I parked in the covered parking thinking positive that maybe it would snow and I wouldn’t have to dig my car out. I hiked inside just to find that my flight had been canceled due to weather but they were soon able to squeeze me onto another flight. They told me it was a small plane and asked if I would check my bag since it was so full. I said “sure” thinking they would maybe do it complimentary since it wasn’t really my preference and I was really proud of myself for getting all that I needed in a carry on bag. I handed over my bag and down the belt it went. She then turned to me and said “How would you like to pay for the luggage?” I looked at her kind of confused and handed over my $25 fee in cash that my mom had given me from a generous people contributing fundraiser she and my aunt and other community members have been working on in the form of a quilt raffle. The quilt is beautiful and my mom had given a me a portion of it for travel. She told me of one of her clients that had walked into her office and laid some money down on her desk and said “Tell your daughter to fly to Seattle.” I’m not sure how he knew I was considering going to Seattle but he wanted me not to worry about the expense. So many people have been such a blessing in my life every day! So I found my way up to the gate (Boise isn’t real large) and sat and watched as others “Gate checked” their bags at no cost. I was quite annoyed but insisted to myself not to be angry about something silly especially since my need had been met with no burden on me directly. The flights were easy and I spent the whole first flight reading my book “Prayers of Petition, breaking through the impossible” It is powerful and interesting. My second flight was typical Crystal, visiting the entire 2+ hours with the guy next to me. I finally found myself in Seattle at almost 7pm. Joel was waiting at the gate for me and he had a big smile when he finally saw me. I hadn’t seen him since Thanksgiving and it was nice to get a hug and encouragement from him. We got my bag and met his mom outside, she had flown in the night before. After a short burst of being lost we were on our way to his grandmother’s house in Auburn. It was great to meet Joel’s family. I felt instantly like I fit there and they were so loving and warm. We had dinner and visited with his aunt and uncle and grandma for a while and then settled into our PJ’s. I felt tired but anxious. I finally snuggled up to Joel and fell fast asleep. I woke up around 7 and started to get ready even though we didn’t need to leave until 10. Joel’s Grandma is so much like mine, in that even though she had a broken arm she was rushing around trying to wait on all of us. She is a little tiny woman with a big spirit and lots of personality. She and Kris made breakfast and soon time had escaped us and we were on our way to the hospital. As I rode in the backseat on the way, I had flashbacks to the movie. I felt nervous just as she described even though it was just a consultation. “What if they say something I don’t want to hear?” “What if this Changes my life forever?” were the thoughts going through my head. I felt in a bit of a daze as I stood there, filling out paperwork and paying for the appointment with money Kris had transferred to my account earlier in the week. I felt emotional, I could feel the heat in my face even though I refused to let hot tears escape. They finally called us back to the room and I felt in tunnel. Like I was in a bubble by myself, but I wasn’t, I had the support of Kris and Joel and I was grateful for it. The Naturalistic oncologist, Dr. Cain, came in first. She reviewed my history and we dug in. She suggested a few therapies that I hadn’t heard of before such as Iscador it is made from mistletoe and can be given to increase the ability of the immune system. Of course you can’t get it in the US and I would have to order it from Germany and give myself a series of injections a few times a week. She also talked to me about high dose vitamin C infusions which is something I have been considering for a while now. These would be especially important if I did any traditional treatment. She thought I was on track with a lot of what I was already doing and changed the doses of a few things and told me of a few brands that she thought were better than some that I was using. After that I saw Dr. Chen, the regular oncologist. He was much more “medical” and had a few things made up in his head when he walked into the room. We visited and he looked over my charts and clearity foundation information. He decided that Corboplatinum/Taxol (which I did 3 treatments of at first) in a low does, weekly form would be his best advise. His reasoning was that he thinks I wasn’t on it long enough before and that in lower dose and more frequent would lesson the side effects as well as give the tumors less time to repair themselves. He believed that once we got the tumors to reduce some, adding Avastin later might be an option. He also thought teaming it with High dose vitamin C would help also. His final suggestion for the moment was that once I have insurance would be to do HYPAC a heated intra peritoneal chemo where they debulk and make the tumors “raw” before adding hot chemo to the abdomen to help coat everything. He seemed positive and even said he thinks there is a chance I could reach “partial or full remission” No other Dr. has ever said that to me. I often hear that “There aren’t a lot of options with this disease.” “Our goal is to slow its growth and give you more days on this earth”. Never before have I had full hope that this may someday be almost or fully gone. He had me lay back on the table and he poked around on my belly. I lay there staring up at the Philips light bulbs praying he won’t find anything too concerning and holding my breath because I hate when Dr’s touch me. He felt a little firmness on the right side but didn’t seem too concerned. He told me that he would recommend I do something soon just to head off any further problems. He did put me at ease a little when he said if I had tumors on the bowel that I would have more bowel symptoms so it was probably scar tissue or nerves in the abdomen that were affected. I spent the last few minutes getting some blood drawn to get a final look at where to go from here. Checking my kidney functions and Ca-125 and my G6PD(to ensure I can have high dose vit C) I left there feeling refreshed, relieved, exhausted and kind of confused. I have had a hard time getting excited about going back on chemo especially a chemo that I have already done before. I didn’t realize how much I was bummed at the thought of losing my hair again but it is only hair and it grows back. If I could get on board with thinking it could be the answer I would be willing to go through it all again. I have some fear about the impact on my health, my job and mostly my finances. I have no idea how I would fly to Seattle weekly and have $2800 per month treatments + Dr. visits, labs and extra immune support. I am not ruling it out and I am so grateful to Bob and Kris for their support and help with this appointment. It will play out just as it is supposed to.

We made it back to the house after lunch and we discussed what had happened earlier in the day. I was grateful for Kris, being a nurse she was able to understand the terms with out my explanation and she has such an awareness that she could see I was tired from the experience. Trying to absorb and make a decision can be exhausting. I had the realization during this trip of how it must feel for her. I know how much my mom is desperate for me to be well and how devastated she would be if anything happened to me. I became aware that she was willing to fight extra hard for me not only because she cares about me but by doing so and assisting in my being well and healthy she was preventing her son from feeling pain. As a mother I can understand that desperation but I am determined that I WILL live and love for a long time to come. We had a nice visit and my friend Sarah arrived just as it was time to take Joel to the airport. It was sad to see him go but I was so grateful to have him there with me even if it was only for 24hours. Kris kindly drove us around and Sarah and I played catch up until nearly midnight. It was so good to see here and laugh and see each others growth. We talk on the phone but haven’t seen each other in over a year. I finally found my pillow and blanket and fell fast asleep. The final morning I packed my things and said my good bye’s and walked through the airport. I saw a guy that kept looking at me, by the time I hit San Fran I was ready for a bite to eat and he walked up and sat by me. He said I saw you and thought I have to say something to that girl before I leave. He was in the army and ready to head back to Germany. He visited for a moment about life and kids and said ” I know I met you for a reason, I just don’t know what it is yet.” He disappeared into the hallway with my business card in his pocket and a smile on his face. I know from my friend Mark G that no encounter is by accident and maybe I will impact his life down the road.

I got home late last night and am back at it today with a 10 hour shift at work. I came back to a mess that isn’t uncommon when I’m away. Pat told me that he doesn’t like when I am gone and that I can’t leave anymore too bad because whitefish here I come!!! i just have to get through a few more days.

Why does fear play a factor in our lives? Why does guilt eat us alive sometimes? Some days I find myself afraid of what the future might hold. I experienced a suicide again yesterday and I thought to myself, “Could I ever do that if things got bad enough?” I don’t think I could but it’s hard to say what that level of emotional pain might actually feel like. People who are willing to die are in serious pain, that I know for sure. You have to believe that there is no way out to want to die that bad. I’ve been there at times in my life but somehow have found a way to dig myself out of that hole. Experiencing love and support and being willing to say you need it helps with that. Life is fleeting, this we know for sure. How do we make the most of the time we have? Planning for a future that may never come? I try to save and plan for what comes next but I also have decided to live for right now too. I like to have a little in my savings but I also like to travel and make memories with those I love. Looking back those are the things we will treasure the most. When we pass that’s what the ones we love will have to hold on to. I pray against a spirit of doubt and fear often. I know this is something I struggle with and am working to overcome every day. Why does it haunt me? I think to keep me moving the right direction. To ensure that I love each moment and take nothing for granted. I often fantasize about a day when I won’t fear cancer or the pain but I think the pain keeps me in reality. Knowing that small things are small and that the big moments are most important. I want to “Dream like I might live forever and live like I might die tomorrow.”

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Dear Cancer,

Crystal Fernandez-Seid — Mon, 26 Sep 2011 06:00:51 +0000

Dear Cancer,

You have been both a thorn in my side and a blessing in my life. You cause me pain and embarrassment at times but you have also given me many gifts. You caused me to have these scars that each day remind me that I am damaged, you have given me this ostomy that makes me often almost come to tears because of it’s unruly behavior at times and my insecurity about this “thing” that remains at my side at all times. You took my belly and made it look like some kind of Halloween costume that I am embarrassed to even show the ones I love. You made it so that I have a hard time enjoying the things I love, like swimming and running and wearing pants. You made it hard for me to enjoy intimacy because I am constantly worried about the sound it makes and I sure know how unattractive it is! You’ve made it so that it’s hard for me to enjoy eating out with friends and family because I am constantly worried about the effects of the choices I make on my body. I often will stay home from birthday parties and dinner invites because I am afraid of having to say, “I can’t have that” or the noise my ostomy might make after I eat. You make it so that I have to bring my own food to Thanksgiving and Christmas because the “normal” treats I grew up on are unacceptable for those of us who have unusual food needs. You make it hard to travel and enjoy it because I am constantly trying to figure out what I’m going to eat and where I’m going to deal with this appendage above my left hip. You make it hard to make plans to travel because I never know when you will rise up and knock me back in the form of a bowel obstruction or other fun problem. I find myself spending extra money on silly insurance “just in case.” I try to find a way to believe that God will make sure I get to go on my trip and that he has me wrapped in his arms helping me walk through these days but I still find myself in fear that I will fall short of my goals of seeing a long life with my daughters. I find myself writing my will instead of writing my goals “just in case”. Before I travel somewhere I make sure that everyone knows where my medical records are and where to find my will if anything goes wrong. These are a few of the things that bring me down and make me hate this disease but there are a few hidden blessings in the midst. I now love harder, forgive faster, and try to live life to the fullest. While others are dumping their whole day into trying to make more money and build huge pensions, I am putting a little away and putting a little toward having some fun and making memories. You have taught me that planning for the future is important but if you dump everything you have into your FUTURE and then don’t live long enough to see the future then what is the point of living right now? You have made my goal of making memories with my girls and others that I love more of a priority and remind me that tomorrow I can make more money. You have taught me to hold my daughters a little longer and have a little more patience. To enjoy the noise they make even when I think I have had enough. To make sure they know how much I love them EVERY day and to make sure they know how proud of them I am. You’ve soften my heart when it comes to people’s defects both physical and emotional. You’ve taught me that seeking everyone’s approval isn’t that valuable and ultimately I have the most valuable people already in my life. You’ve taught me that staying in a loveless marriage isn’t what I want for myself or what I want to teach my daughters. You’ve taught me about real love and how it feels to be loved during the good, the bad and the ugly. I’ve learned which of my friends are in it for the long haul and which ones were temporary. I’ve learned how to know if people love you for who you are or if they love you for what you can give them. I have learned to soften my tone and my emotion towards things that really don’t matter that much. Because of you I have learned what the word unconditional really means and what it feels like to have unconditional love. You’ve brought powerful amazing people into my life that I would likely never have met otherwise. You have shown me that “you get what you give” and all my giving to others really did pay off when I needed to lean on someone else. You’ve brought me closer to my family and the friends who have stood by me through it all. You’ve taught me that I have some really solid people in my life and that I no longer need to chase half-assed friendships. I have been sad to see some of those friendships end but I know that I need to settle into these great relationships and cherish the time with those I love. You have taught me not to judge others short comings so harshly and I am doing my best to not judge my own so harshly either. I am learning to be ok when my house isn’t perfect and know that people are coming to see me and not my mess. You’ve taught me that it’s ok to cuddle up with someone I love and let the dishes go until tomorrow. You helped me find someone I can truly love and that can stand behind me when things get hard. You have taught me how to support others and show them where to find strength and wisdom. You have forced me to evaluate my own life and choices. You have forced me to look at my diet and be my own advocate when it comes to my health. You have made me a better mother, a better friend, a better sister, a better daughter, a better lover and a better person in general. I think for the most part the Good stuff out weighs the crummy parts. There are many days when I can see the impact of you in a positive way in myself and in the people around me. I often hear that it affects people I have never met. So thank you for the powerful changes you have forced me to make but I still want you out of my body.

-Crystal

It’s been a very busy few weeks with some big ups and downs emotionally

Crystal Fernandez-Seid — Sat, 08 Jan 2011 02:02:34 +0000

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.

Today is day 2 of a 10 day water only fast

Crystal Fernandez-Seid — Thu, 08 Jul 2010 06:15:36 +0000

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….

Starfish

Crystal Fernandez-Seid — Wed, 09 Jun 2010 03:40:42 +0000

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 :)

Opening up about how it really feels

Crystal Fernandez-Seid — Wed, 26 May 2010 19:56:21 +0000

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 :)

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

Crystal Fernandez-Seid — Fri, 07 May 2010 17:33:03 +0000

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.

I am ready for some sunshine!

Crystal Fernandez-Seid — Sat, 01 May 2010 19:53:25 +0000

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.

I got a hair cut today.

Crystal Fernandez-Seid — Thu, 22 Apr 2010 04:09:50 +0000

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.