Help Crystal Fight Ovarian Cancer

Stifled

Crystal Fernandez-Seid — Wed, 08 Feb 2012 17:13:31 +0000

Today I am feeling a lot better. What started out yesterday as a normal day with the usual highs and lows ended in a pretty good scare on my part. I had a fantastic talk with the guy next to me about the will to live and faith. While sitting there talking to him the nurse got my carbo platinum going(I always get Taxol first) and he and I finished up our conversation. I headed back to my own bed and laid there for a few minutes using my ipad and listening to music. I had text Mark to let him know that I would be about another 20 or 30 minutes and we could get going.(He had left to run a couple errands) I then got up to go to the bathroom and while inside I felt a little congested and coughed a couple times, I thought it was just maybe a cold coming on. I headed back to my bed but the cough continued, it was strange it came on really fast. I kept drinking water thinking maybe I just had something in my throat. The lady sitting in the chair near my feet looked over and asked if I was ok, I replied “I think so” right about then I could feel my chest get really tight. One of my favorite nurses walked by right then and looked over with some concern. I said “My chest is really tight” I could nearly not even get the words out. Next thing I knew 4 nurses were standing over me as I coughed and gasped. They pulled the privacy curtains around us and started pushing benadryl and cortisone, they may have even given me epi but I’m not sure. I could see their concern and they asked someone to get the pharmacist. I could see my heart rate on the monitor and they were doing my blood pressure constantly. They worked amazingly as a team and kept calm while they worked on me. My heart rate was 131 and my blood pressure was also skyrocketing as my 02 stats(oxygen) were dropping very low. They kept checking my heart rate manually because they couldn’t believe it was so high all the sudden. As they pushed the meds I could feel them go in and my chest began to loosen up. I started to breathe a little better but was still gasping a little so they had me take a few puffs of and inhaler. That helped a lot. Things started to slow down and I could hear my heart pounding in my ears. They told me that it is not uncommon to build up a reaction to the carboplatinum. They told me that I may not be able to continue the treatment. I felt emotional. I was overwhelmed at the thought of putting myself through three weeks just to be told I might not be able to keep going, did I want to keep going??? Mark arrived and my heart rate was starting to slow down and I was starting to breathe normally. About that time my hands swelled up and I broke out in a head to toe rash and got really chilly. It was an odd experience. I was so grateful to have such amazing nurses around me that responded so quickly. For about an hour after that they kept an eye on my fast heart rate and oxygen. I also couldn’t breathe out of my nose for about an hour, it had swollen shut on the inside from all the inflammation but eventually went down. They told me that they weren’t sure if they were going to let me go home. I was exhausted and drugged and soon found myself fast asleep. When I woke up Mark’s smiling face was at the end of my bed and the nurses were standing around as well. They told me that I was doing much better and that I could go home but asked that I go back to Mark’s and take a nap first before driving home to let the benadryl wear off. The pharmacist came over and talked to me. He told me that he would have to talk to my Dr. but if I were to continue this regimen that I would have to be heavily medicated. I gathered my things and hopped in Marks car which he had to graciously parked right out front in his hurry to check on me. We headed back to the house and I laid down while Mark went to his meeting. I zonked out and enjoyed another nap. When I woke up Mark was back with dinner and I was feeling much better. We ate and visited, I shared with Ryan the days events and we talked about plans for his upcoming 18th birthday. I’m honored that they have considered me a part of the event. I love setting up fun things for people. I would love to be in the event business. Anyway I love that kid and am excited to help Mark with the details of getting it all ready. About 7 I felt ready to head out and had to make a quick stop by the mall to pick up some pants I had hemmed and I was on my way. Today I feel pretty good, just a little tired and stagnant, not sure what to do next. I guess I wait to hear from my Dr. to see what he suggests but I am a little anxious about continuing even on heavy medications. What if the reaction is worse next time, do I really want to have to be on heavy meds? So many choices and the plot thickens..

Guy Next to Me

Crystal Fernandez-Seid — Tue, 07 Feb 2012 20:48:19 +0000

I was able to talk to the guy next to me. It was beautiful and left us both in tears. Powerful day!

Sad and Happy Together

Crystal Fernandez-Seid — Tue, 07 Feb 2012 19:00:45 +0000

Today I feel sad and happy. This place always brings mixed emotions.. As I lay her getting ready to get my third treatment I can hear a conversation going on “next door.” The gentleman is talking about how they want them to go to Portland and he says “he can’t be away that long.” I can hear the pain in his wife’s voice as she tries to convince him to try and fight. I hear him say ” it’s just prolonging it, my uncle got cancer and he didn’t take any of this chemotherapy.” he is feeling like he is only doing this to give his wife some more time and I can feel him giving up. It is heart breaking and as he begins to tear up as the nurse talks to him. I can feel his pain and my heart aches to speak to him. I understand his hopeless feeling, I was once there myself. I remember the days when I thought I didn’t have a chance. I began to feel hot tears in my eyes but fought them back. I may try to talk to him if the moment arises. On the other side of the coin there’s happy. Happy to be alive, happy to have amazing daughters, a great family and boyfriend and the ability and support to fight for what I believe in. Mark came with me again today and he is comic relief and everyone loves him. He asked Dr. Zuckerman today “on the miracle scale of 1-10 where would you put Crystal?” Dr. Zuckerman replied “An 11.” he went on to say, “not to be morbid, but I don’t think ANY of us thought Crystal would be here in 2012 when we met her.” Mark looked blown away, I think people sometimes think I am exaggerating a little when I tell them my prognosis. I am at a 2 and a half years since I was diagnosed this month, long past what they expected and still going strong. They told me that I was doing great and that he takes no credit for my success. He said it is all about me, my healthy lifestyle, will to live and hard work. That makes me feel good, I’m glad my hard work is amounting to something. I also saw Dr. Carr and Dr. Perez today, they were both impressed with my progress and results post surgery. I have been really good to keep oils on the burn and they were both super impressed with amount of healing I have experienced already especially during chemotherapy. They told me that whatever i am doing to jeep doing it and we should continue to see results up to about 4-6 weeks so hopefully it keeps shrinking. I’m starting to get cloudy headed from the drugs so tah tah for now.

What Great Weekends are Made Of

Crystal Fernandez-Seid — Mon, 06 Feb 2012 20:14:27 +0000

Crystal, Sunnie, and Tara

I am back to real life after an amazing weekend with my girls(Sunnie and Tina) We had so much fun. It was a weekend filled with eating out, watching great hockey games, dancing the night away and the SPA. These two girls are two of my favorite people in the world. We of course stayed up too late talking like teenagers and Sunnie and I had a slumber party in the living room. Sunday we got up and I finally had a much needed conversation with my sister. After that we were off to the spa. Sunnie had planned to treat us to facials and who am I to say no to that?! We got there about 11 and soaked in the immersion pools and ordered lunch by the pool. At about 1:15 we went in for our amazing facials and even finagled and extra 10 or 15 minutes out of them. We came out so relaxed and glowing. We lounged by the pool a while longer drinking fruit infused water and eating dried fruit. It was such a beautiful day. Then we met with Tara and got all of Sunnies products in order. She is like me when it comes to Eminence, we want it ALL but she was with in her budget so we left there happy. We opted for some Mango smoothies and sat by the fire in the lobby of Shore Lodge and enjoyed a few more minutes together. Sunnie looked at me and said “I need 1 more night.” I smiled and agreed but we gathered our things and headed home. Sunnie packed up her things and headed back to Fruitland and Brian came over to watch the game. I was so tired and kind of uninterested and soon found myself asleep on the floor next to the fire. When I woke up Brian was asleep too and the game was just ending. I kind of laughed to myself because he and I are usually such sports fans but we were both beat. I ate a bowl of cereal and watched garbage TV until late into the night because now I was wide awake. Over all such a great weekend! Today I am preparing to head to boise again to begin week 3 of this journey. So far I still have all my hair. I keep checking but it seems to be all intact. I even still have to shave my legs so we will see, so far, so good. My belly is starting to look better. the welts around the perimeter are nearly gone and the giant blister spot is getting a little less tender. The way Sunnie explained it to Tina is that it looks like someone took a giant cigar and burned the crap out of me. That’s a pretty good visual of what it looks like. It’s still pretty tender but it’s getting better every day. I see the surgeon tomorrow so we will see how he thinks its doing but I can see a huge improvement in the amount of tumor on the outside of the skin. I also see my oncologist tomorrow for the first time since this started and I am anxious to see what he has to say. I got the Iscador ordered and looking to take a trip to Seattle at the end of this month. I am anxious to get the Iscador and Vitamin C going and see how it helps. 2 down 10 to go.

Sunnie is Coming!

Crystal Fernandez-Seid — Fri, 03 Feb 2012 21:13:23 +0000

I may have gotten a little ahead of myself about how good I felt. Yesterday and today were a little harder but still sort of tolerable for the most part. The nausea and fatigue have been tough and I can tell I am a little short with my girls and frustrated with the mess at my house. Awareness is the first step though so I will continue to work on that. Yesterday was Brian’s birthday and instead of making him a nice birthday dinner we had organic mac and cheese and Kobe beef hot dogs with green beans per his request. It was pretty good but kind of funny to me. I wish I could taste, that’s one of my biggest frustrations. I hate that nothing tastes good yet I force myself to eat because I know I need the nourishment and I “feel” hungry. I feel like I constantly have low blood sugar or something which could be from the steroids partly. I feel a little better today than I did yesterday and am hopeful that by tomorrow I will feel good enough to go make a few runs at the ski hill. I have yet to go all season and tomorrow is $25 instead of $55 so even if I only make a few runs it’s worth the savings. I am also really looking forward to having Sunnie here this weekend! We are going to hang out and eat and play in the spa. She is treating us to facials and I am grateful for a relaxing day with “my right lung” She and I are so close and I am so grateful for her. I know no matter what happens in our lives that we won’t go a day without talking to each other. It will be nice to be able to lay in bed and laugh with her, it’s been way too long. I can’t explain the type of relationship we have but it’s almost like we were once conjoined twins and seeing how we are only 7 days apart we nearly were, minus the different mom thing… We know what each other are thinking all the time and we talk every day, several times, if we can. We don’t see each other as much as we would like because we are both so busy and live farther apart now than we used to. I really miss her living with me but love her husband SO much too and happy about how happily married she is. I hope to have that some day myself. We still make an effort to see each other when we can and talk often. Over all it should be a great weekend if I can just muster up a little more energy.

Round 2, Day 3

Crystal Fernandez-Seid — Wed, 01 Feb 2012 17:16:47 +0000

I had my second dose of Chemo on Monday and yet again I had my loving friend Mark Goforth there by my side. He has been a bigger gift in my life than I can even describe. He’s a real catch and I am bound and determined to find him a QUALITY lady. I just am not really ready to share him yet :) Just kidding, she can have him every day except Tuesdays(that’s when chemo will be now) but really he is an awesome man. Authentic, generous, funny, loving, successful and a FABULOUS dad. I couldn’t have ask for much more of an example in my life. He and his son Ryan have just accepted me into their life like I was family and they bless me so much. Mark has an extra room that he graciously calls the “Crystal Suite” because I just moved right on in and I call his place Hotel Goforth. Let me tell you, Hotel Goforth has some wonderful accommodations and I instantly felt right at home there. Mark doesn’t seem to mind me being there once a week and I have started to look forward to my time with him, even though it means chemo is coming too. Mark is one of those people who you can pour your heart out to, laugh your butt off with and let him set you straight all in the same conversation. He fell into my life at the perfect moment. He keeps me accountable to my feelings and lifts me up when I fall down. A gift is the only way I know to describe him yet that doesn’t seem truly enough. He is in some ways almost like a father to me and I admire his parenting style. His son Ryan is an amazing kid, respectful, courteous, loving and genuinely amazing. He is also an amazing athlete and I am really looking forward to seeing him play LaCrosse this spring. Ryan and his friends prove to me that there is still hope for the future. I love to hear Ryan’s friends call Mark, Mr. Goforth. That level of respect is so powerful yet they have so much fun with him too. I hope to find a similar balance in my own parenting.

As for chemo… this week I feel surprisingly pretty darn well so far. I get pretty tired at the end of the day but overall am holding up pretty well. I can’t really complain too much honestly. A little fatigue isn’t bad at all compared to what I dealt with before, in some ways I am almost worried that it’s not doing enough. Last week with the chemo then surgery I wasn’t feeling too well but this week is tolerable so far. I would love to lay down and take a nap but if that’s all then I will take it. I also still have all my hair. I check it often but so far haven’t lost any that I can tell. It feels a little dry but in tact. I really need a trim and to color it but I keep thinking, why do it if it’s going to fall out. Last time I had hair for 12 days before it really started to go and today is day 9 so time will tell. I still have to shave my legs too so maybe I am going to keep it this time, we’ll see. I really want to start exercising again too. I’m tired of this chubby out of shape body. it’s time to get it in gear a little more. I’ll go easy as not to upset my bodies balance too much but I need to oxygenate these cells! My belly isn’t as sore today but it sure is ugly. I have these dead cells and peeling skin, it makes changing my appliance challenging at times. It makes me almost sick at times to see the skin peeling away from my body and the pain is kind of intense at times but overall it seems to be doing what it is supposed to. I will see Dr. Carr and Perez again next week to assess how it is progressing. Dr. Perez says I’m his test dummy, That’s encouraging :) They did fly the equipment here from Portland for me though so I appreciate the effort. So far round 2 day 3 is going as planned. We will see what tomorrow brings.

An Amazing Few Days

Crystal Fernandez-Seid — Tue, 31 Jan 2012 21:44:06 +0000

I had a great weekend. after a 10 and a half hour day I headed straight to the hockey rink to score the game between U of I and BSU. It was a decent game that resulting in Idaho beating BSU 4-0. I headed home and off to bed. I actually slept in and laid around a bit in the morning before heading to town to watch the parade. It was FREEZING but I saw my girls and Mekaty even through me a necklace. My best friend Tina was also in the parade and I had helped get her costume together so that was fun to see. Once that all came to an end the girls and I headed to the rink to get some lunch and do some skating. I haven’t skated in like 8 months and it felt good to have my skates on. There were way too many people and the ice was really torn up so I went real easy so I didn’t get hurt :) I mostly just played with the girls and my friend Nicole and her daughter. It was fun to be out and about and in good company. After we were done there we walked down town to look at the booths where the girl got these super cute Wolfe hats and we played outside but the cold was getting to me so we headed home. Brian brought over some chicken and I made rice. That’s when I realized how tired I was. I laid down in front of the fire snuggled up with my girls and we chose to watch Charlie and the chocolate factory rather than go to the ice show. I just didn’t have it in me. Around 8:30 I finally got it together and took the girls back to Daricks because I had to work the next morning. I made it just in time to see the hockey game start. Scoring the game is fun because we get the best seats in the house and I get to talk to the refs. It’s a great way to learn more about the game also. The game got over really late and Tina convinced me to go out for a bit. I only went out for a half an hour but just wasn’t feeling it. I was very sore from the procedure, the band was kinda lame and I don’t drink so the fun was limited. I also really missed Joel and was feeling a little down that we have these split lives. He was in Whitefish with a couple of his friends and here I was with mine. I am so looking forward to being able to share my day with him. I am grateful that we haven’t had to go more than a couple weeks at a time without seeing each other but I am praying that he will find a job closer this summer. He is such a comfort to me and I love when he is around. The girls miss him too. They ask about him a lot and call him when they have a chance. Mekaty told him he has 1 WEEK to get here to see us :) Lucky for her he is planning to come on the 12th for a few days. I have chemo on Valentines Day so he will be here with me for that, lucky him. I am excited to see him. I wish there was some way I could move there but it would just be too hard with the kids right now.

Darick and I had a really great conversation today. He and I are finally getting to a better place. I think my setting some boundaries and standing my ground is new for him but he is responding to it well. I think he has softened a lot over the last few months and it is both beautiful and sad for me. I’m sad that it came to this but grateful that he is reaching that place if it is only for our kids at this point. He is a good man but we just weren’t good together. We are both happy and things are starting to fall into a routine. I appreciate his help and flexibility with our schedules as my treatment kind of stirs things up.

Something that blew me away this week and really touched my heart was a journal entry written by friend Elizabeth. she has been a friend since 8th grade and she had asked if she could write a little something about me and add the link to my website. I of course agreed because I am very open about my story. When she text me and said that she had finished and asked for my approval. I went to the website expecting to see a reference to my name but instead I found an entire journal entry dedicated to me. I was bawling by the end of it because you sometime forget how much you can impact someone Else’s life just by being kind, honest and open. It was beautifully written and I was so honored to be a part of it. She is such a gift and followed it up with a sweet gesture of a massage at a local place. I was teary all day and teared up again when I was telling Joel about it. It’s powerful to realize that your story can impact someone else’s life.

Here is the link to her post: http://thespiralupward.wordpress.com/2012/01/29/cancer-sucks/

Not so fun day

Crystal Fernandez-Seid — Wed, 25 Jan 2012 20:25:54 +0000

Yesterday was my procedure, it started out pretty early as I had to be there at just after 7 am to begin the process. Mark G was by my side and he was his usual silly self. His humor is a good distraction for me and I am so appreciative to have him in my life. My Mom also came down and once she arrived Mark went ahead and headed back to his office to get some work done. The poor guy had sacrificed the whole day before to be with me so I was glad he was going to be able to get a few things done. They finally got me back to pre-op and my mom was there with me while they went over the details, got me accessed and finally into the CT room to get things started. They got me settled on the table and started the IV sedation. It was difficult to lay there exposed to the world with this lovely thing protruding out of my skin next to my ostomy. Dr. Carr began by giving me some local injections. I still felt pretty awake but thought maybe it just hadn’t hit me yet. Shortly after that I felt one of the metal probes being pushed into my belly. I flinched and said “Ouch, I’m still very awake.” They gave me some more meds and I don’t remember anything after that. The next thing I knew I was being wheeled into recovery and all I knew is that my belly HURT. During the procedure 2 metal probes/needles were inserted into my abdomen and into the surrounding tumor tissue. A Cat Scan was done to insure that the probes were in the right place. Because of the tumors attachment to the colostomy tissue they were unable to get all of it without causing damage to the intestine so the goal was to get as much of it as possible without going past the “margins.” Once inside the tumor the probes were filled with liquid nitrogen and the gas would cause destruction of the tumor tissue. The hope is that killing the tissue below the surface would cause the tissue above the surface to retract back under the skin. There is a little bit of fear that the skin above will be damaged and the whole tumor could come bursting through. The thought of this is devastating to me. I know that we will take one day at a time and I am believing for a good outcome. As I lay there on the table going under sedation I was praying, “God give them clear margins and let them have better success than they can even imagine.” I am hopeful that this will be a great option and I am believing so. My faith in that was a little shaken this morning when I woke up and began the painful task of removing my ostomy bag. As I got closer to the tumor I could see this clear liquid oozing out of my belly. At first I wasn’t sure what it was but as I pulled the bag off a little more I realized that I was pulling the skin off of what looked like a large water blister. I grabbed a sharp pair of scissors and cut the skin so it wouldn’t continue to tear and cause me pain. I was almost afraid to keep going but I slowly removed the whole bag and cleaned the area around the stoma. I put some essential oil and gauze over the open wound and then a piece of tegaderm over that and then finally my ostomy bag. My poor belly is severely swollen and tender but I haven’t taken any pain meds yet, i am trying to avoid it for a few reasons. Today the nausea is a little more hefty and I’m not sure if that is from the chemo or the surgery. It’s very likely a combination. The tumor tissue is now dead under the skin and my body will take time to absorb it. We should know in 2 or 3 weeks exactly how well the procedure worked. I haven’t eaten anything yet but I did have a little juice and tea to take my antibiotic(I tried to not have to take it, but the tumor tissue disintegrating inside my body has a higher chance of infection.) and Brian brought me a juice. I’m a little worried that the juice may give me gas and the tension around my ostomy could get pretty uncomfortable. So far I am tolerating it pretty well but my head ache is the worst. I already feel like I have a little chemo brain but I am fighting through the symptoms and believing this is going to be a good thing. I talked to Seattle again today and it sounds like I will be headed back there in a couple weeks to visit with Dr. Cain and get started on Iscador and maybe Vitamin C. All in all I’m doing ok and each day is one step at a time.

Today’s the Day

Crystal Fernandez-Seid — Tue, 24 Jan 2012 00:23:32 +0000

I woke up at 5 with plenty to think about but was finally able to fall back to sleep for a bit. I felt kind of separate from my life this morning. I felt like I was getting someone else’s body ready for the day. I put on my armor for the day including Emla creme to numb the sting makeup to hide the dark circles and prayers to surround my thoughts and body. I called first thing to see if they would be able to move my chemo back to the afternoon so that I could see Dr. Thornburg this morning. I thought he was going to give me a Vitamin C infusion but after muscle testing me for some time he told me that I had a bad route canal and that it was affecting my healing. He isn’t sure which tooth it is for sure so he wants me to have and extensive set of x-rays done to see if he can locate the problem. I find myself a little skeptical because it seems that everyone has SOMETHING they think they can use to help me and of course all of it costs. Mark has been such a huge blessing to me in so many ways and financially is no exception. I wondered why with all the holistic Dr.’s I’ve been to, why this hasn’t been found before? Anyway he was very direct and seemed quite sure of this direction. He wants to see me back next week but we will see how that plays out. On the way there this morning I got a super sweet message from the girls wishing me luck for today. Gosh what little gifts they are. After the appointment with Thornburg, Mark and I headed back to Boise and had lunch at a place called Salt and Tears off State street. Mark knows the owner as he tends to know EVERYONE. He’s kind of like me in that way. He’s a hard to miss kind of guy. Standing 6’3″ and a personality to match in size he is an amazing addition to my life. The owner of the restaurant/coffee shop offered to feed me when I was in town if I would help her with some gluten free bread and dessert recipe’s. She was very sweet and such a good addition to the team. After lunch we packed up and headed to MSTI where I would receive my first of 12 rounds of chemo. When we arrived the nurse took me over to a bed and got my vitals. She said that my BP was 148/82, she asked if I was a little anxious lol. I had to laugh a little because at Dr. Thornburgs office I was 110/64. It’s funny how your body tells so much even when you aren’t listening to it. Jackie(one of my favorite nurses) accessed my port and we visited for a bit while we waited for my labs to come back. When they did everything came back normal and we began with the pre meds and benadryl, then came taxol and carboplatinum to round out the cocktail. Mark stayed with me the whole time and took a photo journal of the day. I got all the info for tomorrows procedure and found out that they expected me to stay the night after surgery so they can manage my pain. I didn’t realize that was even an option so that caught me off guard somewhat but I will take it as it comes. Over all the day was kind of a blur in my own head. Every time I touched my hair I thought ” I wonder how much longer I will have this.” I listened to music and visited with Mark and Jenna and then was finally done for the day and headed back here to Mark’s to rest. I am so Blessed and grateful. Tomorrow is another day and another challenge. I m ready to face it all head on and just do the best I can.

Turn and Run?

Crystal Fernandez-Seid — Fri, 20 Jan 2012 15:24:26 +0000

Today I feel a bit overwhelmed. I have found myself a little teary lately, everything makes me emotional but this morning driving to work and thinking, “I wonder if this will be my last “good” day for a while?” I have also been thinking about what to do with the girls this weekend since I don’t know how well I will feel in the near future. Yesterday when I told Rilynn and Mekaty that I was going to start treatment Rilynn got kind of teary and said “Please don’t.” It broke my heart. I know she remembers how bad it was last time and she doesn’t want to go through it again and neither do I. I tried my best to reassure her that it won’t be as bad this time but just as I have some of the same nagging concerns she does. She also made the comment “I don’t want a bald mom.” So I am PRAYING that maybe I won’t lose my hair this time just for her. I know she will be fine if I do and they enjoyed shaving my head the last time :) I have thoughts of calling off the chemo often. I try to tell myself one day at a time. I was listening to Christian radio as I always do on my way to work and an ad for a healing seminar came on. I found myself feeling kind of guilty that I didn’t trust enough to believe that I AM healed even though the bible says I am. I read scripture saying that “I won’t believe the reports of negativity and I will believe by his stripes I am healed.” Yet it is so hard to believe it is healed when you are looking at an ugly tumor on your belly and seeing it grow. I don’t want to not have faith but I don’t want to pass up opportunities either. I believe God gave us Dr.’s and medicine to some degree. It’s hard to know where to draw the line.

I had a great talk with Joel last night and I am seriously considering trying to go down to 4 days a week for the next three months. He has really encouraged me to do so and has offered to help me many times if I need it. My stupid pride gets in the way some times. I want to do it on my own :) The support of many people has helped give me a bit of a cushion to do so if I can swing it with work. I’m going to talk to my boss today to see what she thinks. So the decision today is follow through or turn and run???