Updates: Faith Instead of Fear

I just wanted to put up a post to let everyone know how I am doing and what’s going on. Well, I must say things can be better, so I am just going to get to it. While in the hospital for my last bowel obstruction I found out that the chemo is keeping my abdominal tumors the same size, which means they are not shrinking. L   On top of that they spotted two new nodules on my lungs, one on each lung. They are small and the Doctors are not too concerned about them right now and do not know if they are cancerous or not. They are keeping an eye on them and after my last chemo, which is July 1st I will get a scan and maybe a PET Scan to determine what is going on. To be honest I think they may be cancerous because my ca-125 cancer marker is rising and it should be falling, especially if the abdominal tumors are staying the same size. When they told me about the lung nodules I must say my heart sank and the feeling of defeat hung around for a day. But my rule is to not have a pity party more than one day because every day I am feeling okay is a good day, regardless of the situation.

The next step now is to go to Moffitt Cancer Institute in Tampa, FL. and try to get on one of the clinical trials. In order to qualify there are a lot of tests they need to run and I also need to be 30 days chemo free.   Right now, I am trying to coordinate things such as sending paperwork and scans in order for them to process and get me into the system as fast as possible. Ideally, if I get accepted, the sooner after the 30 days of being chemo free the better.   Cancer doesn’t mess around and I want to know as soon as possible if I get accepted or not for the trial. I really hope I get on the trial because if I don’t then my rope just got cut a lot shorter. My only other option is to change chemo’s and continue on that path until my body no longer can. It’s pretty bleak to say the least.

To be perfectly honest the last few months have been rough. Between my health issues, being tired all the time, the business being in its slow season and my car needing a major repair I know we are due for some good times. We are due for a harvest season.  If you follow Joel Osteen he is always talking about seasons and how everything and everyone has a season. Sometimes you are harvesting, sometimes you are planting, sometimes you are sowing and sometimes you are watering. Well, right now in my life, I feel like I have been in a planting season. I say this because I am going thru chemo and trying my hardest to stay positive and do my best physically. But it is really hard. It’s not easy, mentally, to surrender to your body, physically. Especially when you don’t want to. Every day I am reminded that I can’t do a lot of the things I used to do and it is frustrating. For instance, my brother is visiting and he and Jason decided to go Paddle boarding in Crystal River. Normally, that’s no big deal, but now it is a big deal. Just driving far is tiring, nonetheless, doing anything. Let’s not even talk about the heat, its sooooooooo hot and I can’t deal with it. I also just want to be able to eat a huge hot fried breaded chicken wing with fries, a big ass salad and wash it all down with a pitcher of beer. But no, I can’t do that anymore because my bowels suck from all the surgeries. Lol! Okay rant over. I just had to get that off my chest.

Anyway, I told Jason I think July is our month. I have a feeling good things will come in July, our harvest season.  I just keep praying, staying positive and dream of chicken wings. Lol!

Thanks for all the prayers and good vibes people are sending its really making my days. It’s like a little bit of sunshine through the dark clouds.

faith instead fear

Updates and You Have to Go After What You Want

I wanted to do a quick blog post to let you know how I am doing. Overall, I am doing well. I have good days, bad days and in between days. I just had my third chemo and I am tolerating it pretty good. I am not having any numbness in my feet or hands, but I do get bone pain from my waist down and that really sucks. I also feel the chemo brain; chemo brain is a real thing and sometimes I just have a hard time concentrating and remembering little things, but some days I am fine. The chemo brain will clear up when I get off chemo.   My Hematologist Oncologist said I may get an allergy to the Carboplatin chemo that I am doing and if that is the case then I just have to take the one chemo, Taxol. She said if that happens then the treatment would not work as well without the Carboplatin. But at this point I just say, “it is what it is.”

Since I am a fighter and I like to be prepared I decided to go back to Moffitt Cancer Institute to check with the Doctors to not only get there opinion on my current treatment, but to see if there are any clinical trials that may be open if this current chemo treatment doesn’t work. They said the same clinical trial that was open last year is still open and accepting patients. I would most likely qualify if I had measurable size tumors.   The Doctor’s at Moffitt agreed that I have taken the right approach to my treatment and believe that if this current treatment doesn’t work that I should shoot for the clinical trial. If I do not get on the clinical trial then I have to option to either do more chemo or try hormone therapy.   I discussed with my current Hematologist their plan and she agreed with their approach so that is good. At least I have a game plan moving forward. I am praying and hoping that by a miracle my current treatment will work and put me in a remission, but if not then at least I have a direction and that gives me hope.

My last blood test, the CA-125, showed my tumor marker stayed the same. I was disappointed because I obviously want it to go down, but my Doctor stated that even after my chemo treatment if they scan me and see the tumors stayed the same size they consider that successful. I just shook my head and said, “I guess to you that’s success.” So if that is the case I am definitely shooting for Moffitt’s Clinical trial. My last chemo is July 1st then I have a scan to see if it has worked.

Oddly enough, with all the craziness going on around me and inside of me I have noticed that I have had feeling of happiness and peacefulness. I know it sounds crazy, but it is true. Usually, at night when I am lying in bed my mind will start wondering and thinking. My mind comes up with the craziest things and scenarios. Anything from death, to wondering if people will remember me, if my treatment will work, will I die in pain, the thought of my parents losing a child, my brother losing a sister, Jason losing his spouse and meeting someone new and starting a whole new life, will he forget about me?  I mean my mind goes to all of those places and beyond. But lately I have noticed that even with those thoughts I have peacefulness over me and most of the time I am happy. I have also noticed that I genuinely want to live. I have come to terms with my situation and have accepted what may be, but overall I have realized that I must really want to live or I wouldn’t give a crap about going to other Doctor’s or looking into other treatments, trying to find my next move. It’s pretty crazy because there are a lot of people in the world that are perfectly fine and they want to die or they are miserable and hate life for no real good reason.   Personally, at this moment in time I just don’t feel that way and I have every right to feel that way.

I will leave you with this. Everyone has a choice and you choose how you want to handle a situation and choose how you cope with a situation. No matter how you play the game of life, it’s a risk. I look at the things people complain about, money, relationships, work, friends, and family and just think why are they complaining? Because 95% of the time there is a simple solution. But the “simple” solution is what people fear the most and tell themselves, “It’s just not that easy” or “it’s complicated.”  People misconstrue the phrase, it’s just not that easy” or “it’s complicated” when in reality the solution is really just not the most convenient for them and people let the inconvenience dictate their happiness instead of trying hard enough to really change their situation. In life, when you really want something or you really want to change something most of the time it will not be convenient and that is when you find out what you’re really made of. Are you willing to take the risk?

So, on that thought I move forward. I pray that I stay strong, that God continues to direct me to the right people and treatments and that no matter what comes my way I face it head on because I choose to stay positive in my world of chaos.

Updates and Having Faith Gives Me Hope.

I want to share with everyone how I am doing and what’s going on.   My big day was last Wednesday. That was the day they placed my port, ureter stents and later that night I started chemo. It’s been pretty rough to say the least and not because I hate these stents, but because the stakes are a lot higher this time around.   My cancer came back faster than expected and has spread all over my abdomen. The largest spot being on the front of my stomach and other areas of my abdomen as what the Doctor quoted, “What looks like ground beef” on my liver and other parts of the pelvic wall. There is also some fluid around my heart that they think is metastatic ovarian cancer. They hope the chemo will help all this, but because of the severity they have upped me to a stage 4. My prognosis is grim even if I do get thru chemo these next few months, 1-3 years tops. But, as I’ve heard time and time again, “We just don’t know.” I find it amazing how even in today’s day and age with all the technologies they still can say, “We just don’t know.” I hope you picked up on my sarcasm there. It’s depressing to say the least and I am trying my hardest to just go with the flow, deal with it and hope for a miracle. I am adjusting to my new normal right now. My mind says, “You are fine, let’s go do things,” but my body feels the complete opposite. It’s very hard dealing with the physically pain and emotional pain right now. However, I have come to a realization that there is absolutely no way I can deal with this kind of thing without having faith. So with that in mind I would like to tell you how I found my faith; and trust me it came in the nick of time. I realize that God is a touchy subject, but this is a true life story and its part of my journey so I feel it is important to share.

About three years ago, while I was at the gym, my good friend Delynn came up to me and handed me a picture, pointed to it and said, “That is the real Jesus.” I looked at it and smiled then flipped it over and read the back and it explained how to have a real relationship with Jesus Christ. I have to admit that I was quite surprised because Delynn is a free spirit and free thinker and I never heard her say anything about Jesus to me before that day. She explained that she has a friend that comes to the gym and carries that picture with her wherever she goes. The friend also makes additional copies and hands them out to people so they too can have a relationship with Jesus.   I told Delynn, “Thank You and I appreciate the picture.” I then put it in my gym bag and when I got home I put the picture of Jesus on my corkboard. As those three years went by many papers, receipts and misc. items made their way in front of Jesus, without much notice.

Fast forward to November 3rd 2014, one week before my last debulking surgery to remove the recurrent cancer.   A friend of mine told me to watch the movie, Heaven Is For Real. This is the movie where a 4 year old boy goes to Heaven while he is undergoing a surgery for an illness he had. During the movie he states he went to Heaven and saw Jesus and met his Grandfather, unborn sister and saw a great many things. What was interesting to me was when the boy’s Father kept showing him different picture depictions of Jesus and would ask him, “Was this the Jesus you saw?” Each time the boy would respond by saying, “kind of or Jesus’s eyes are more blue.” The boy’s responses always being nonchalant and assured.

Well, at the end of the movie, it shows a picture of this little girl who is named Akiane Kramarik who painted Jesus when she was 8 years old, who also claims to have had visions of heaven. The boy’s Father comes across the Akiane painting and asked his son, “Is this the Jesus you saw?” Without any hesitation or surprise the boy says, “Yes, that’s him, that Jesus.” The ease and the confidence the boy emits when seeing the picture of Jesus that Akiane made just makes you really wonder how can a child so young and innocent lie? Why would he want to? At that age there is no motive to lie about something like this.

So, I know you are probably asking yourself, Joyce, how did you find faith then? Well, the picture the boy identified as Jesus, at the end of the movie was in fact, the same exact picture of Jesus that Delynn gave me, three years ago. After watching the movie, I immediately went to my room, removed the built up papers and brought the picture down stairs, held it in my hand and stared at it in front of the TV in disbelief. The reason I had disbelief is for the sheer fact that Jesus found me three years ago and I just ignored him, he was there all along.  From that day on, November 3rd 2014, I started a real relationship with Jesus. It was one week before my debulking surgery and at that time I was thinking to myself, “I don’t know if I can do this again.” I was so depressed and upset. Finding the picture of Jesus was a sign that I needed to give my fears to him. To have hope and faith in him and no matter what happens to me I am being led down the right path. It may not be the path I want, but it’s my path for a reason.

This leads me to one last point that I would like to make. I believe we all go thru tests in this life in order to better ourselves, our souls. The only way I can really wrap my head around what is happening to me, is to believe it’s a test. I have thought about it a million times, a million different ways and that’s the only thing that makes sense to me. Maybe it’s my test not to lose faith, which can lead to losing hope, which can lead to losing my will to fight. I can easily see how people get tired and just don’t care. You get tired of being sick, you get tired of living with pain 24/7, you get tired of worrying and you sure as hell just want to feel normal. So, maybe not losing faith is my test and maybe it’s not just my test, it’s everyone else’s test that cares about me.

I think the point is this: no matter what happens to me, whether I live or die, I cannot lose my faith and the people around me cannot lose their faith either, because in the end, believing in something is better than believing in nothing. Believing in something gives you hope. In order to have hope you really need to have faith. Having faith means you believe in a higher power/being.

I believe that Jesus is Lord overall and I believe with my heart that God raised him from the dead.   He has been here all along and no matter what I was made to be a fighter.

Jesus picture that was given to me.

Jesus picture that was given to me.

Back of the Jesus picture that was given to me.

Back of the Jesus picture that was given to me.

A Meeting Out of Thin Air. Fairies are real.

As I was flying back to FL, on Tuesday, I was thinking of the last trip I took to NJ, back in September. It was a very special trip for two reasons.   The first reason being it was my annual trip I take back to NJ to do the Ovarian Cancer Walk that is held every year in West Orange, NJ. All my family and close friends do the walk with me. This past year was the 4th time we all did it. The second reason it was a special trip was because out of thin air a connection was made, between me and a lady named Barbara, whom I met on my connecting flight from Charlotte, SC to Newark, NJ. I would like to tell you about it because most people find this story fascinating.

During my flight to NJ, back in September, I found myself booking my trip last minute so I didn’t get the seat by the window that I normally like. I was forced to choose from either an aisle seat or middle seat. Unwillingly, I decided to choose one of the aisle seats that were left in the three seat row. During the two hour flight the plane ride went as expected smooth and quiet.   However, about 20 minutes before we landed the man sitting next to the window turns and started to make general chit chat with Barbara who is in the middle me and the window guy. I over heard her say she lived in FL, so as the outgoing person I am I chimed in and asked her where in FL she lived? This got us talking and she later asked me why I was going to NJ. I kindly told her that I was going to do the Ovarian Cancer Walk and I do it every September, but for some reason unknown to me I found myself telling this woman, who is a stranger, my whole cancer story. How I went thru treatment and I was cancer free and then it came back and then the Docs are like its terminal and there’s nothing to cure you. Blah Blah Blah.

So this is where the story gets good. After listening to me she says, “I don’t know if you believe in this kind of thing, but my husband is intuitive and many times he can help people where the Doctors can’t. “ Meaning sometimes he can see if the Doctors are overlooking something or perhaps there is something that is inhibiting a person’s health via diet or toxin; things like that. She stated that all she needed was a picture with just me in it and she would ask him to read it for me and see if he picks up anything that may be of use to me.   Well, as you know me I tilted my head to the side and said, “Sure, why not.” We exchanged email addresses and that was it.   We exited the plane and went on our separate ways. Within two days I had my Mom take a picture of me and I sent it to her to give to her husband named JP. Since they do readings on Sunday’s, I believe she got back to me the following week and the reading she sent back to me was astonishing.

What I thought was going to be a little reading with a little advice turned into something so much more than expected. He didn’t just do a reading on my health it was a reading that encompassed all areas of my life and they were broken down into categories: Socially, Familial, Intellectually, Relational, Financially and lastly Health.

I was debating on putting the whole reading up in this blog, but I decided against it because it’s personal and it is pretty long. However, one part that was interesting that I will share with you was when he said, “She’s very attracted to the 70’s way of thinking, communing with nature. I see flowers in her hair, communing with trees, elves, wood fairies…Gallic culture.” The reason I found this interesting was because, One, I like to make flowers that go in peoples hair. Two, I really enjoy nature and in my 20’s I went thru a phase where I would go to festivals and camp out.   Three, which is the strangest of them all is in 2012, I swore I caught a fairy in a picture that I took of myself! I was wearing shamrock earrings that light up. In a sequence of pics that where taken with my iphone the last pic looks like a fairy. Down below I will post some pics for you to see which are NOT or never where on Facebook, except for the one of Jason and I.

As for my health he mentioned that my digestion and digestive flora was all messed up. I didn’t understand what that meant until my surgery in November. After I got a foot of my intestines out I had major digestive issues. My digestive flora was way off and it took a while to correct it thru diet and medicine. The other thing he mentioned in regards to my cancer was this: “I see her stomach completely inflamed. She should go to dry foods…dry seeds, cooked millet, barley, rice. Avoid wine and beer, as yeast is the problem. She has too much yeast in her body that is the trigger for her illness, as it can cause many diseases. To be healthy she has to remove the yeast. Yeast causes ill health. Her PH is too high. No vinegar, no citrus as they don’t help with the ph issue. Dry fruit is good.   Right away she has to cleanse the yeast and lower her PH. All comes from that…that is the trigger. Inflammation in intestines, yeast, PH imbalance may have triggered other physical trouble.” After I found this out I went to a local Doctor, he did in fact say that I do have a slight allergy to yeast.   So, ever since I received this information in the reading I have tried my best to eat properly and cut out foods with yeast. However, I do treat myself to pizza occasionally, since it is my favorite food. I do not know if this will work, but like the guy who held my hand said, “We have to believe in something.” I do believe. However, I know for many people this type of thing is very controversial and my answer to you is, to each their own.

Since my initial meeting with Barbara, I have kept in touch with her and JP.   In really dark and stressful times, such as deciding on whether or not to do chemo, I have turned to them for some guidance and they are always willing to help. There help and insight is always genuine and without expectations.   Their vision is, “That people everywhere will embrace their divine perfection and experience the freedom of living through the wealth of the spirit and expanding through joy.” You see, JP not only reads people, he has “visions” or insights on all types of subjects such as, birth, joy, death, happiness, reincarnation, obligation, metaphysics…They have a website and a Youtube page with over 200 short videos giving insight on all different types of subjects.

My meeting out of thin air with Barbara came at a really great time for me. I was heavily into Edgar Cayce and was reading up on all of his past articles that where written about life, the meaning of it, souls, twin souls, health topics, metaphysics…etc. So, for me to meet her by chance was a gift.  I personally find all of the videos very comforting and intriguing. They are very philosophical and topics I have always thought about and pondered.   It’s so exciting to really sit and think about our souls mission and the expansion it goes thru from being incarnate. However, I know many people just don’t want to think about this stuff, don’t care about thinking about it or just do not believe in it. But like I said, to each their own.   Nevertheless, if you are interested in this type of thing I am including the links to Barbara and JP’s Website called All In Whole and I am also including a link to their Youtube video page. All the information is free since they are a non-profit organization.

In conclusion, I would like to say that the reason I didn’t write about this, “Meeting Out of Thin Air,” with Barbara back in September is because I had to sit down and see how I felt about the situation. Even though I am an open minded person, the choices I make are very thought out. I had to see for myself if I felt JP and Barbara where unpretentious and I personally feel that they are.   I think what they are doing is great and for them to find it their mission to help people without any expectation is one of the most honorable attributes I have seen from an individual. Many people try to take advantage of people that are in a weak or comprised state/mind set and trust me I have met 1 or 2. However, Barbara and JP are not those people; they are trying to just help the greater good.

So, with all this in mind I move forward. My next scan is on March 13th. No matter what happens I know that in my heart I have been trying my best and that’s all that I can do.

No matter what we do or how hard we try we are never in complete control of our lives. Appreciate each day and learn from it. No matter, if it’s good or bad.

Website: http://www.allinwhole.org/about.htm

Youtube Page: https://www.youtube.com/user/AllinWhole/videos

In a series of pics, the 3rd photo shows what appears to be a fairy!  It looks like it is just chillin on my shoulder.

In a series of pics, the 3rd photo shows what appears to be a fairy! It looks like it is just chillin on my shoulder.

Flowers in my hair

Flowers in my hair

A Beautiful Encounter

I had to write about a really great moment/encounter that happened to me today.  Earlier, I was in Walmart and I had my service dog, Bentley, with me.  Since he is tiny and really cute he attracts people.  I noticed there was a crowd of about 4 people admiring how cute and good he was being.  As one lady reached out to pet him she noticed he was a service dog and immediately became very respectful and said she should not come right out and pet him.  I told them all it was fine to pet him because he loves the attention and is also an emotional support dog.  I don’t know why, but I told them that he also gives me a lot of support and comfort since I am dealing with cancer.  They gave me there blessings and we all parted ways.  However, an older man with short blonde hair and glasses came back to me and said, “Can I ask you a question?”  I said, “Yes.”  He reached out his hand and asked if he could hold my hand in his hand.  In my head I was thinking, “why not?”  So, I gave him my hand.  He asked me what type of cancer I have, how long I have had it and my age.  I happily told him everything he wanted to know.  He closed his eyes for about 20 seconds and then looked at me and then said, “I wish you the best.”  I cocked my head to the side, smiled and said, “Thanks!” and then we parted ways.

About 10 minutes later as I was wondering around the store and the same guy comes up to me and asked me if I wanted to know why he did that.  I absolutely said, “Yes.”  He got really emotional and started to tear up and explained to me that when he was younger, in the 1960’s he was in a bad helicopter accident and was hospitalized for 45 days.  He explained to me that while he was hospitalized every day a young nurse would come in and hold his hand.  He found out that she had inoperable lung cancer.  About 6 months after his release he gets a phone call from the young nurse and she told him that her cancer was gone and nobody knew how or why.  She told him she believes it was from holding his hand.  He said, “I don’t know if that is true or not but, ever since then I have never felt compelled to hold another person’s hand and pray for healing, until today.”  He said, “I have no idea if it will help or not, I am not a “healer,” but we have to believe in something.”  I was amazed that this random person would be so compelled to pray for me and not even proclaim he was a “healer.”  His honesty and compassion was compelling and I gave him a hug and said, “Thank you for sharing your story and taking the time to try and help me.” And that was that.  It was a great moment that two strangers shared. I never even got his name and he never got my name.

It’s moments like that which make me stop and realize that I may have it shitty, but I am blessed.  I pray every day to God for help, peace and guidance and I ask him to send me his Angels not just in heaven, but on earth as well.   It’s moments like this one where I step back, realize, that even though that man may not have been an “Angel,” per say, he did an Angel act.  And that is what really mattered.  So, I take notice of these things and feel comfort in ways that I never saw coming, but prayed for.

roses

My Final Decision. It’s Not What You Do, It’s How You Do It.

I just wanted to give everyone a quick update. Yesterday, I saw my original Gyn/Oncologist because I needed to speak to another person about what I should do about treatment.   I was really worried because I thought it would confuse me more, but it actually has helped resolve my heavy heart.

After I spoke to her about the two different opinions I was getting from the surgeon and the chemo doctor she said, “Don’t tell me what they think, let me tell you what I think.” I said, “okay.” She then went on to explain to me that there is no right or wrong choice, it’s just choosing what makes me happy. She mentioned that since my type of ovarian cancer is rare there is not a whole lot of data and studies out there on it. However, the two major studies that come from Europe have said it doesn’t matter if the patient does chemo treatment right after surgery or if they wait, because the outcome will not improve their overall survival rate. With that being said, she said to me, “If I was you, I would wait to do chemo because it doesn’t improve your odds of living longer and why put those toxins into your body unless you really have to.” She also didn’t think I should do the Phase 1 trial in Maryland. She did say, “let’s wait and see what your next scan in March shows, if it’s clear you’re good, if it’s not, then we go from there.  Even if it does shows tumor growth I still don’t have to do anything if I don’t want to as long as I am feeling good that is what really matters. However, if it does come back I may qualify for the original clinical trial that I was going to do in July at Moffitt, if it is still available. So that’s good.

Other than that she basically said to enjoy my life, now, since I am feeling good.   She said, “Go to Costa Rica it’s beautiful! Have some fun and do all the things you always wanted to do. I could see my mom out of the corner of my eye and the tears where just rolling down her face. It was one of the toughest things I ever had to witness. I could see the love in my Mother’s eyes for me, it was heart breaking. The doctor tried to console her by saying statistically she was more at risk of dying in the next 5 years than I was. She then said, “Losing a child was on the list as the #1 single hardest thing a person can go thru in life.” It was just so heart breaking. She then asked if I believed in Jesus, I said, “yes I do.” She reminded me to have faith thru him, and no matter what, we have to believe we are all going to go to a better place. However, we all have different time lines and that the second we are born we are all technically “terminal.”   I couldn’t have agreed more. The Doctor then turns to me and my mother and says, “It’s not how long you live, but it’s what you do while you’re alive, so make memories, those last forever.” I couldn’t have agreed more. Then I realized that I had tears rolling down my face.

So this visit with the Doctor reassured me that the choice of not doing chemo was the correct one, for me at least. My biggest fear thru all of this was not going thru treatment, not dying, but it was the question; was I making the right choice? As sad as it is I feel relief, at least for right now. I just have to take it one day at a time. As my brother says, you have an official “Fuck it card.”

So, with all of that I am taking some time for me and trying to distress after all of this. I am taking a road trip back home to NJ with my Mother, in early February, after I see my Urologist. We are going to stop along the way in Savanah and take a day tour of the city because I always wanted to go. Then we are going to stop in Asheville, NC to stay at the Biltmore Manor for a day because I always wanted to go.   Then stop somewhere else along the way, preferable a place that was on Diner’s, Drive-in & Dive’s, since I love that show and I always get the munchies when I watch it. Lol! And apparently I need to start saving for Costa Rica so I can go with Jason. Lol! I haven’t officially started a bucket list or anything because I have done a lot of things that I have wanted to do. But I am definitely open for any recommendations. Sky diving is on it, but I am scarred shitless. :-/

So, for now all I can say is this: Life is so much brighter when you focus on what really matters. Not on the petty things. Savor every second of your life and appreciate what is all around you and who is around you. Do not surround yourself with negative people or situations, but surround yourself with positive people and positive things. God wants us to enjoy this gift of life that he has given us and not waste a moment of it because every second is precious. So to all of you out there reading this go out and enjoy your lives, tell all your friends and family that you love them, make memories together and just be happy.

I love you all!

how many breaths

Decisions, Life Making Decisions. I Wish Cancer Would Leave Me Alone

I know it has been awhile since I have last posted.  Things have been very stressful for me the last few months.  I have been dealing with making the best educated decision as to what is the next best course of action for me in regards to treatment.  And apparently it’s not cut and dry.  I wish it was cut and dry and I want it to be cut and dry, but it’s totally not.

So, here is what’s been going on.  Since my last post I have seen both my surgeon and my chemo doctor in regards to post-surgical treatment, which means drug therapy.  I have two totally different opinions.

My chemo doctor is telling me that I have the option to choose to do chemo or not do chemo.  The reason I have the option is that for my kind of ovarian cancer I am most likely chemo resistant.  I could choose to do chemo, but there is no guarantee that it will work.  The odds are like 5-15% that it would work.  So, my thoughts are why do something that is just going to break my body down, for those kinds odds?  I personally do not think it’s worth doing right now for those odds.  She also said that they will watch me closely with scans and when it comes back, which it definitely will come back, I can do chemo at that time if I want to.

My surgeon on the other hand is like no! You have to do chemo right now and you only have a limited 12 week window to start it from time of surgery and my window is pretty much shut right now since its been so long since surgery.   But he wants to put me on Taxol and Gemzar once a week for 6 months.  I was like that’s a lot of chemo I didn’t even get that much the first time. He said, “that’s my recommendation.”  The Caris report came back (Report that tests the chemo against the cancer) and he thinks that chemo may help so even with the crappy odds its worth a shot, in his opinion.  I told my chemo doctor what my surgeon said and she said regardless of what the reports say I would put you on a different chemo, Taxol and Carboplatin, because that’s what you got last time.   She thinks regardless of what the report says the likelihood of the chemo working is less likely than it working.  I mean these two Doctors can’t even agree on what type of laxative I should be on.  One says mineral oil and the other is like, that must suck, so try this because it’s better.  My mind is in constant motion and its very emotionally taxing.

I finally told the surgeon that I choose not to do chemo so he says well we better start looking for a clinical trial for you since the only thing the Doctor’s do agree on is that the cancer is definitely going to come back.   So, the surgeon sends my records to MD Anderson in Texas and National Institutes of Health (NIH) in Maryland.  MD Anderson said they had no studies for me.   Last Thursday I get a call from NIH and they say they have no studies for me, however, later that same day I get a call from a Doctor at NIH, he said, “I know they told you that there are no studies, but you qualify for my study.”  Its an immunotherapy drug and its only in a phase 1 that started in 2011.  It’s not a study just on ovarian cancer but on all cancers right now and we are taking people that do not have any measurable disease, so you qualify.  He sent me the information and I read it over and it sounds interesting and good. The side effects aren’t that bad.  But the question is, will it benefit me?  I know I would benefit the study, but would it benefit me?  I never thought I would consider doing a phase 1, but I kind of am.  It would be a pain in the ass because they would fly me to Maryland every month to get an injection then fly me back home to FL the same day.  I would also be getting scanned every two months.  Now that’s a full day at the office if I ever saw one.

I believe that in every life a person is put here to learn a lesson.  The only lesson that I could possibly be learning is to trust my decisions and be confident in them.  Regrets are the worst and I do not want to feel like I made the wrong decision.  Especially since I have so many different opinions.   I don’t know which decision is right for me.  I do not want to suffer and I do not want to watch my body break down, at least not right now.  When I talk to the surgeon he makes me feel like I am going to die tomorrow if I don’t do anything.  When I talk to the chemo doctor she makes me consider my quality of life along with my decision.  It’s so upsetting and I can’t believe I have to make these kinds of decisions.  These are major life decisions that I am forced to make.  I am just so tired of all this.  I wish cancer would just leave me alone.

Unless you know me and you know what I am dealing with you can’t tell I am going thru all this turmoil because I look “normal” right now, or healthy I should say because I am not on any medicine.  I am so grateful for that and I want to hold onto that because I know in the future, could be very near future, all that will change.  I do not take it for granted. I am thankful every day.  This leads me to one last thought. I can’t stand when I hear somebody say, “Well, I could get into a car accident tomorrow, we all just don’t know and we all have limited time.” I have one thing to say back to that remark. Well, the doctor isn’t staring you in the face saying that you definitely will die in a car accident and it’s definitely going to happen within the next 3 years.  How do you think you would feel?  You would wonder every day for the next 3 years if today was that day?  You would try to map out the safest route so you wouldn’t get into that car accident.  You would buy the safest car out there to protect yourself when you did get into that car accident.   But, it doesn’t matter because the doctors are still telling you no matter what you do, or how you do it, you will still get into that car accident.  And on top of that, no matter what you do, you will not survive that car accident.   SO, now can you put yourself in my shoes.

I Got Knocked Down, But I Got Up Again. My New Normal

It’s been a day since I was released from the hospital for a bowel obstruction. I was able to escape this time without having surgery, but the Doctors say I am at high risk for another since my colon and parts of my intestines are narrowed from the surgery I had last month. They are making me use mineral oil to lube up my bowels to make things more “easy going.” My older friend joked how models use mineral oil as a weight management tool because your body does not absorb it and it also blocks your body from absorbing fat soluble nutrients. All I am going to say is that I have a new profound outlook towards models that do use this because its neither pretty nor is it glamorous. It’s downright disgusting. I feel like a damn oil rig and I will leave you at that.

When I went into the ER at 9:30pm on Sunday I was pretty positive that I had a bowel obstruction, but was not 100% until they did the CT Scan. Jason and I knew that if it was a bowel obstruction the seriousness of the situation because my last Doctor told me that most women with ovarian cancer die of bowel obstructions. I will never forget when then Doctor in the ER came in at 1:30am and told us it was indeed an obstruction and I might need surgery and if that is the case its risky since I just had surgery a month ago.   At the same exact time Jason and I just looked at each other and I can only explain it as sheer fear and terror. Jason started to cry and I was just stricken with fear. I started telling Jason things that I wanted him to know about finances and personal items and just morbid shit, but I felt like I had to say it. I kept thinking is this it? Am I going to get out of here alive?   Is this really how it’s going to go down? My family isn’t even here they are in Nj. I just kept thinking I am not ready to go, I am not ready to go. I have always said that I am not afraid of death. I just don’t want to leave the people that I love and care about. I want to live and experience life with them. That is the thought that crossed my mind, not the fears of dying per say.   This past week has felt like I literally just came back from war and the hits just keep on coming.

While in the hospital I found out that the Chemo Fx Essay test, which is supposed to use my tissue samples to see which chemo positively affects my cancer, came back as insignificant. They said they couldn’t grow my tissue samples enough to have the chemo tests work on them. I think that was my breaking point. After I heard that I just broke down in tears. I mean how much more ca1n I take? And it’s really just the beginning. I have been thru so much this past month. My recover y has been so hard with constant bowel issues and now this. I was really counting on this to help aide as a tool towards my treatment. Luckily they did something called a Caris Molecular test. I don’t really know what it is and even with all the paper work it’s still so confusing. Hopefully, when I see my Hematologist on January 6th to discuss chemo treatment she will go over it. They say it can also help aid in picking chemo treatment. Just the thought of chemo at this point is just another blow. It’s just one thing after another.

Right now physically I am feeling okay, but emotionally is a whole other story. While I am still hopeful and have the fight in me I can feel each new issue or problem slowly chipping away at me and each new problem it makes it even harder to deal with. Luckily there is Xanax. Lol! Anybody that has to go thru cancer not only has to be mentally strong, but spiritually strong. I can feel the struggles going on inside of me and it’s no joke. Each new problem that comes up slowly opens my eyes to how real this is and how this is my new normal and I know it will only get worse and that scares me. While in the hospital, the first nurse that I had on Monday was a women named Susan. Susan is 68 years old and she told me that all the fears, all the anxiety, all the pain and struggles that I am going thru she understood 100% because she too is a Teal Sister and a Teal Warrior. She was diagnosed with stage 4 ovarian cancer 5 years ago and has gone thru it twice already. She also said that she thinks there is a good chance it might be back again and that Thursday she will find out for sure. On Wednesday Susan said if you see my Friday you know I am fine, if not, then things didn’t go well. Friday came and I never saw Susan. I fucking hate cancer.

Sometimes I think why can’t I just go in some tragic accident or something?   Fast and relatively painless. Seeing and feeling my body go thru this prolonged process is bullshit and anybody going thru this will tell you the same thing.

This brings me to Natalie. Natalie is a girl that I am proud to call my friend and my pen pal. We met thru one of the online cancer boards three and a half years ago and have been friends on Facebook ever since.  Natalie is my age, 35 years old, has stage 3c ovarian cancer just like me. She lives in Kentucky and I live in Florida. Two girls, two different worlds, but the same disease unites us. Recently in Octo00ber I had the pleasure of finally meeting her for the first time in Pensacola Beach.   Even though Pensacola is 6 hours from where I live it was a journey I had to make and would not have missed for the world. She has been dealing with this disease about a year and a half longer than I have and I look up to her because she is so brave and has also been thru so much. The day we finally met we sat looking at the ocean and talked all day about who we are, what we are dealing with and our thoughts about the entire situation. We ironically are dealing with very similar complications and being able to talk to her has helped me so much. It was a meeting I will never forget. Sadly, I can’t help but think of other women in the world our age that are dealing with this same exact disease at this exact moment in time. Having someone to talk to other than a therapist does help and I am just grateful that I have her. I am just sad that we have to bond over cancer.

As Christmas is approaching I hope that anyone reading this truly understands that health is the one thing you cannot buy.  Respect yourself, tell the people you love how much you love them and don’t take the days you feel good for granted.

Merry Christmas.

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Me an my Service Dog Bentley. He visited me in the hospital.

My Mother, Jason, Bentley and I on my release day

My Mother, Jason, Bentley and I on my release day

Angels and Updates

Update:

I want to start off by saying thank you to everyone that has been following me thru my blog.   As many of you know I do not like to put open posts on Facebook about my medical conditions because that is not what Facebook is for and not everyone wants to read it. A blog gives people a choice to open it and read what is inside. I only put a few quick Facebook posts up in the hospital because I didn’t have access to my blog.

I have been home from the hospital a little over a week now and I am recovering from the surgery.   The surgery went well.  Last Monday at my post-op while the doctor was taking out the staples and stitches I was able to really ask him some questions. He told me he decided to take 10” from my colon because he saw some thickening on it, which means it, was a potential problem area.  I also had to get stents put into both ureters. These stents suck so badly. They are so uncomfortable and I get blood in my urine all the time. They are way worse than the incision. I go on Tuesday to get them out and I can’t wait! He also said he decided to scrap my left ureter (this is the pipeline that connects the kidney to the bladder) He mentioned that both procedures where radical, especially the ureter scrap, and most Doctors wouldn’t have done it, but since I am young he thought it was best to be aggressive. He did get all visual tumors J I just have residual left on the left ureter and that is why he thinks I should do chemo.

Chemo is still up in the air. They sent the tumors off to get tested to see which chemo will work best. He thinks it will be the same chemo I did last time, which is Carboplatin and Taxol. I decided if that is the case, I will do it. I just never wanted to be on chemo forever or on a study that would last forever and only be able to take “chemo breaks,” a month off here or there.   That’s no way to live for me. After speaking to him I decided that I really do like this Doctor, not just because he is very skilled, but because he takes into account a person’s age and their needs. This is very different from my previous experience and ultimately why I went to him. I finally have found a doctor that I like.

He also mentioned that he has been with a patient for 20 years with my kind of ovarian cancer and that he has done surgery on her 4 times followed by chemo and she is still doing pretty fine. I didn’t want to elaborate on the word phrase “pretty fine” so I just took it as a good thing. Remember, ignorance is bliss.

Angels    

So, as I stated previously I have met some Angels along the way.   People who know me know that I am a person that has faith and I believe in Jesus. I am not the church type because I know in my heart God loves me whether I go to church or not.   So when I pray I pray for him to send me Angels to surround me not just from heaven, but Angels that are here on earth too. Don’t worry I am not going to go all religious on you now. Lol!

I know that the road I am on is long. Getting thru surgery was my first battle, next is chemo. That being said I do believe everyone that has helped me on this journey is an Angel and that means all of you. As I mentioned in my last post going thru cancer the second time is way harder than the first time.  Every act of kindness is your own personal act of goodness and all of it helps me. Whether it’s a meal that you bring over, a prayer that you say for me, a donation, a card, a good vibe or just a quick hello how are you doing? I truly believe it will all help heal me. Like I said before physical strength gets you only so far.  Knowing that I am loved means a lot to me. It also gives me the strength to move forward without looking back. That’s what got me thru cancer the first time and I know that’s what will help get me thru it again this time.

So I decided to dedicate this blog post to all of you who have taken the time to reach out to me in some way.   I want to say thank you and no act goes unnoticed.

Thank you

Update on Scheduled Surgery.

So, I am just giving everyone a heads up as to what the surgical plan is for Monday. I will keep it short and simple.

The Doctor said I will have surgery this coming up Monday. The surgery will be at FL. Hospital in Orlando, FL.  I go in for surgery at 5am then surgery begins at 7am.  The surgery will last about 2 hours, as long as there are no problems.  However, there is a 50/50 chance of a bowel resection, but no bag. I will definitely need a stent placed into my ureter for at least 6 weeks then they will replace it every so often.   I should be in hospital for 3-7 days depending on what happens.   As for chemo they will send off my tumors to get tested to see if they respond to chemo.  The testing will take 3-5 weeks to get back.  That is good so my body has time to recover.   Last time I started chemo a week after surgery.  So that’s good at least.  I can get my head right for that.  If it’s chemo resistant I will go over other options such as trials or whatever they list off as “options.”   So, now we just pray he can get all of the tumors out and without any problems.

I can’t even begin to thank everyone for the out poor of support. I do not think I have mentioned this, but I take everyone’s support, suggestions, gifts, prayers, jokes, food, funny videos, smiles, etc to heart.  None of it goes over looked and none of it is unappreciated. It really does help me feel better and I believe all the support will help heal me. It means the world to not only me, but Jason and my family.   I am finally starting to feel mentally strong for surgery.  I was battling depression for a while, but I think my psyche is aligning.  I know it’s important in order for my body to get thru surgery.   I will be able to get on Facebook from the hospital so I will give updates as best as I can.

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