BEP- Round 3

Round 3 of my chemo went as expected. My platelets where high so they had to do a TSP before they could get a good return on my port. TSP is apparently what they give stoke patients. But after administration things went well.

The hardest thing about Round 3 was the emotional impact. I am almost 3 1/2 hours from home and bored to tears. My mom was there for a couple of days but then I sent her home because of the hotel expense. There was a big oil convention in town so the prices went from $79 to $200 a night. Fortunately, the hotel I stay at, while not the most fancy, has a medical discount code so I was able to still get the $79 price. Not all hotels offer this discount, so a lot of patients are stuck paying the higher cost or forego their treatment. Anyway, even at $79 it is a $474 expense every three weeks. Not including my 20% in medical cost, food, gas and other incidentals.

After getting home the weather turned stormy and I noticed my breathing was a little more labored and I developed a constant cough. Of course, my sinus allergies were acting up a little. And, the high the humidity, the more present the cough. This continued for the first week. The second week home the cough was still there but not as much. It seemed to present itself when I exerted myself. So, when I went in for my clearance for a 4th round, we postponed treatment to be on the safe side to ensure it wasn’t more than allergies.

On a good note my Inhibin A and B counts went down. No way near normal, but down none the less. However, the question comes after the 4th treatment. They can only give me 4 treatments of BEP otherwise the potential of the side effects go up significantly. That’s a scary thought considering one of them is a secondary cancer of Leukemia. But, then the question is which direction to go in next. And, at what cost.

Round 2: My BEP Experience

I would like to preface this post with a note that this is my experience with BEP so other women with GCT have another resource other than those of the men, which is more common, that have been treated with this regimen. So, I am trying to be truthful about all my side effects, which includes constipation, so if that word bothers you, please do not read this post or skip that paragraph, unless you are about to undergo this treatment. 

After re-reading my last post about Bleomycin, Etoposide and Cisplatin (BEP), I realized I spoke about the nausea and hair loss, but did not touch on some of the other effects that were present. I guess I was more focused on my hair and how people would react when they saw me, so I thought I would be a little more detailed about the nausea and talk about the acid reflux, ringing in the ears, constipation and sleeplessness.

I started my second round of chemo April 16th and finished April 20th. The nausea I spoke of in the first post was still present.  The Cisplatin causes nausea so they gave me Zofran as a preventative. However, I still tended to have some breakthrough nausea which they treated with Compazine.  Another trigger for my nausea was some breathing treatments. They were giving me breathing treatments twice a day due to the Bleomycin. Bleo can affect your lung function. During the first round I tolerated the treatment fine until the very last day, so we skipped the last treatment. However during the second round I noticed after each treatment I began to dry heave. Since Bleo is only administered the first three days and I was not having any shortness of breath they let me skip final two days.

During both rounds of BEP the acid reflux stayed with me non stop. They did treat me with an acid reducer twice I day, which helped but did not resolve the problem.  I found myself snacking on saltines and ginger ale daily to try to combat the feelings. If I was hungrier,  I ate toast with peanut butter. It’s my go to snack at home when I don’t feel well. I like the toast because I figured the bread would help absorb some of the acid and the peanut butter gave me some protein. If I felt like I could eat more of a meal, I tried to order something bland from the kitchen. I am fortunate, MD Anderson brings you a menu and you get to order what you want to eat when you are ready to eat.  Some hospitals feed everyone the same thing at the same time. If you are not ready eat when they bring it to you, you are out of luck. Unless your family sneaks something in for you.

Another side effect of BEP is ringing in the ears. I didn’t mention it the first time because it only happened a couple of times the first two days after round one and then went away. However, after round two the ringing seemed to be louder and occurred more often and longer. It lasted throughout the first week but then seemed to taper off. The second week I was home noticed a couple of times but not as intense as the first week. I called my doctor and she scheduled an audiology appoint to see where I was at hearing wise.

The other issue I experienced was constipation. During the first round I was constipated. Half way through the week they began administering a docusate twice a day and I was able to relieve myself before my release. I went from one extreme to the next but all resolved itself within 24 hours.  During round two they prescribed the docusate from day one, twice a day. I found myself struggling on the last day of my hospitalization without much success. The problem continued at home and made it a difficult to pass anything. I continued to take Colace at home, and was finally able to relieve myself but not without difficulty. I spoke with my doctor about it and found out that Zofran could be the problem, so they are switching me to Senakot during round 3.

The only new side effect that I experienced was sleeplessness. Typically, even after sleeping through the night, I have to take an afternoon nap for approximately two to three hours. Sometimes I sleep a little longer depending what I did that day. However, this was different. I could not sleep through the night or the following day. I wouldn’t classify it as insomnia because I was able to nap for short periods of a half hour to an hour, but then I would wake up. This sleep pattern made me feel more tired than usual. That is when I learned I was being administered a steroid as a pre-medicine and that it could be the source of my sleeplessness. Finally, my body was so exhausted I did manage to sleep longer than an hour, I actually slept three to four hours. However, the next night I found myself restless again. The doctors wrote a p.r.n., which means as needed,  order for Ambien and I was able to finally sleep.

Now with all that said, at my doctors appointment yesterday I found out that my Inhibin levels went down after the first round which means the tumors are shrinking. It takes a week or so to get the results back, so the results from my second round won’t be available for another week. Fingers crossed they shrank some more and the numbers are even lower. I don’t know how much because they are not going to scan me until after my 4th round is complete, but here’s hoping for good results are good.

My first round of BEP Chemo

It has been a while since I posted, but I wanted to post about my experience with my first round of the Bleomycin, Etoposide and Cisplatin chemo regime for anyone with Ovarian Cancer that may be undergoing or about to under go this treatment so that they can be more informed.

When I first started to do research on BEP, it seemed that all the comments were from men that had the treatment for testicular cancer. BEP is used for that cancer as well as rare cancers that have not responded to other treatments. After reading what I read and having the pharmacist give me the run down of all the scary possible side effects, I must say I was a little apprehensive.  My doctor on the other hand was a little more optimistic about what I would experience based on her experience with her patients.

I was admitted into the hospital on a Tuesday. Because they did not get to get started until late in the afternoon I found out that I was going to have to stay in the hospital until Sunday. Which was one day to many. I was stir crazy by Saturday. The treatment consisted of 3 days of 24 hour treatment and 2 days of periodic chemo administration.  They key to minimizing the side effects is slow administration of the drugs.

I ate well the first couple of days, but then the nausea kicked in and I lived off of toast and peanut butter. It is my go to food at home when I am sick. Because hydration is important during this treatment and I was having issues keeping things down, they gave me additional fluids. Towards the end of the week I was able to keep down a few bland foods, so I got to go home on Sunday as planned.

I spent the first week feeling like crap. Not as bad as some described but crap none the less. The second week I started to feel better and even managed to get out of house. The walls were closing in so I was ecstatic.  Then my head felt tender, my face felt hot and I felt a little nauseated again. The next morning I woke up and realized I had a clump of hair on the back of my head. Sure enough it had started to fall out. Now the waste basket is full, but I still have hair on my head. My hair is really think, so I’m not bald yet, but getting there. The only other problem I have had is feeling exhausted and occasionally have some ringing in my ears, but I can handle it.

I go back next week for Round 2. After Round 3 they will scan me to see where I stand and they decide if there will be a 4th round or not. But after that the Doctors will have to switch it up. This chemo is one of the most aggressive and is usually only given in 3 to 4 rounds.

In the mean time, if you live in my town and you see my running around bald and with a mask on, don’t feel bad or sorry for me or feel like you can’t speak to me because you don’t know what to say. I promise you I am good and  I can handle it. After all, my hair will  grow back and I have God in my corner. And, I am still chasing donkeys.

For those who don’t know my story about going to a revival and hearing the story of Saul and chasing donkeys, you can read about it here:

http://www.sermoncentral.com/sermons/chasing-destiny-kevin-taylor-sermon-on-christian-values-160330.asp

My Medical Maelstrom

End of the year snow fall Indianapolis, Indiana.

As snow fell outside, I said good-bye to a year that had been filled with questions about my life. Where I was, where I was going and would I see the new year.  But, there I was, still standing. And as others cheered and rang in the new year, I was left to wonder about the days to come. Only I knew of my medical maelstrom. Had I waited to long?

It all started in October of 2011. The weather was great, I played with my dog, cooked my husband an authentic Italian dinner and then headed to the Emergency Room. I spent the next several months trying to recoup from a hernia surgery that was marred by complications related to the chemo treatment I had been receiving over the past year.

The first three months of 2012 were tainted with residual effects of the previous years medical issues.  I had been offered a chemo treatment I could not afford, my cost $9,797 per treatment every three weeks just for one drug. The alternative was an aggressive chemo that would require my hospitalization, had severe side effects and could possibly cause a secondary cancer. By the end of April I was mentally exhausted and physically tired. I just wanted to run away. And I did.

I walked away from treatment. I wanted a summer of no poking, prodding and hospital trips. I knew it would be risky, but I just wanted to be able to enjoy time with my family and friends. Something I had not had an opportunity to do in the previous year-and-a-half. By the end of summer, I knew I was pushing my luck. But, summer turned into fall and the fall to winter. I just wanted to enjoy Christmas since I was not able to the previous year.  But I promised those I loved and loved me I would go back. So, I made an appointment.

I knew I was in trouble before I walked through the doors of the hospital, as my body was moved in and out of the CT Scanner  and I met with my doctor for the first time in a year. I could feel the tumors. I could see the changes in by body and my intestinal system was at odds with me. And by the end of the day, my assumptions were confirmed and I agreed to seek treatment. My choice, BEP. Short for Bleomycin, Etoposide, and Cisplatin. The aggressive treatment that requires hospitalization. I start January 28th.

I don’t know what to expect. I googled the treatment and found mixed reviews. Some said it wasn’t so bad. Others gave a laundry list of their side effects and talked about how their bodies went into shock. All of them were men with Testicular cancer. No, that is not what I have, I’m a girl. I have ovaries, or should say I used too. I have a rare form of Ovarian cancer known as Granulosa Cell Tumor. Anyway, GCT is stromal tumor and so is Testicular cancer. BEP is an aggressive treatment for sex-chord (stromal tumors) that have not responded to other treatments. While loosing my hair and possible finger nails and hearing, nausea, skin discoloration and rashes, etc are not appealing, as, long as I can stave off pulmonary problems, secondary cancers, cardiac issues and any other permanent damage from side effects, I think I’ll be ok.

I have not decided if I am going to blog during treatment yet. I guess it all depends on if I feel up to it. In a way I do feel obligated. When I was first diagnosed with this cancer in 1998, the information on the internet was few and far between. Most was related to Equine. Yes, that is right, I said horses. A little more information is available online now, since more is known about this rare type of Ovarian Cancer. However, most have not had the same experiences I have. Most developed it after menopause. Most have not had it grow back so quickly. There were things missed by doctors when I was a youth that may have indicated something was wrong. So, if I can put something out there that may help someone someday, I feel like I should. However, my hope is that one day, there will never be a need. Because frankly, cancer sucks.

Pitbull Rescue Hit by Hurricane Issac Needs Help!

It has been a while since I have posted due to the fact I have been extremely busy. However, I felt I needed to post this. 

Villalobos is a Pitbull Rescue facility that is in New Orleans. They have taken in 81 dogs displaced by hurrican Issac, plus their 150 pitbulls and have damage from the storm. They need food and basic necessities. So I am posting how you can help! Please Share!

Text GIVE 10934 to 80088 to donate $10 to Villalobos Rescue Center Hurricane Disaster Relief. Message and data rates may apply. Only works for US mobile phones.

http://www.globalgiving.org/projects/villalobos-rescue-center-heartworm-help/

Link

From Olympic Gold to Ovarian Cancer: Our Interview with Former US Gymnast Shannon Miller

Read more: http://www.mesothelioma.com/blog/authors/staff/from-olympic-gold-to-ovarian-cancer-our-interview-with-former-us-gymnast-shannon-miller.htm#ixzz22dvcX9YU

Thought this was worth sharing.

Letting Go

Hello world, it has been a while since I have posted. I have had a lot of things going on at the moment between health, family, politics and most important puppies. Through it all I have learned that sometimes I just have to let it go, but sometimes I just can’t.

Health wise I am in limbo. I can’t afford the treatment they want me to have. I find myself having to let it go when it comes to cancer. Otherwise, it will eat me alive. We are too rich, by the way anyone who makes over $27,000 and owns two cars is too rich, to get assistance and to poor to afford it. I find it ironic that Obama’s calls his health plan the Affordable Care Act. It should be called Forced Insurance Act because it fails to make health care affordable with or without insurance. It is only affordable if you don’t get sick. My brother called me and said he was excited the Supreme Court upheld this tax on the American public because I could not be turned down for insurance with my pre-existing condition. Well hell, what good is it when I can’t afford the treatment with insurance.

Speaking of brothers, I have learned I have had to let go of my hurt I felt in the past year when he got upset that I spoke with my dad about my concerns for him. Our relationship has improved just recently, but I find myself having to learn to deal with his new political views.  Which at times, remind me of a Dem’s talking point sheet. He says financially he’s conservative, but with social issues he is a liberal. I worry about  who is working for and the influence over him. It is more than being a democrat that bothers me about this individual. It is his underlying ideologies. But, my brother is 27, a grown man, and I have to let go of trying to protect him from the world.

Love those ears.

Speaking of protecting, I found myself working and paying to save the cutest puppy ever. Well almost the cutest, second cutest. My Jake still reigns supreme in that category. This puppy is named Charger. He is not my dog, but I wish he was. He belongs to my husband’s friend. The friend didn’t have money for the vet bill and Charger had Parvo. He was going to let him die and I couldn’t stand by and watch it. After I nursed him back to health, my husband gave him back to his owner. Now my heart is breaking because I know Charger’s life would have been happier with us. He is cared for but it just the bare needs. He lives outside in the elements and at many times is left alone. I know that not every dog owner has the same beliefs as I do. They don’t all let them in the house etc, but still it is hard.  This has been source of contention between my husband and I. I love that puppy so much.  To keep him healthy I have been buying heart worm and flea medicine for him. And,  I sneak by with treats and toys at times. The only good thing is that the wife is starting to warm up to him and he is getting a little more attention. All I can do is educate them without coming across as a jerk to become better pet parents. In the mean time, I have to learn to let go.

WK1 – “Where’s the beef?”

How to tell if you have a spoiled dog: You and your spouse have changed to a plant-based diet and your husband says “We should make a hamburger for Jake, poor guy.”

Today is the start of week 2 of our new meat-less life style. So far things are going well. I actually don’t even miss the meat. The key is to have variety and good flavor. It is still a little hard in the transition because I found myself still consuming some processed foods with the only difference being that it was vegan processed food.  I also found myself consuming a lot of carbs, so I need to rethink some of my choices. Jake is not happy at all.

Jake is used to being spoiled. As my dad says, “I don’t know too many dogs that get steak.” It is an adjustment for him. He was used to sausage, eggs, hash browns, biscuits and gravy on Sunday mornings. During the week, it was fried eggs, bacon and toast at least three times a week. Going to McDonald’s meant there was a double stack cheeseburger in the bag for him. Subway, well, you order a foot long because 1/2 of it was his. Dinner was his favorite meal of the day by far. He loves Italian, Steak, pizza and beef Lo Mein noodles just to note a few. So this vegan thing has got him a little perplexed.

The other night I gave him a bit of my veggie burger. Jake gave me that “What the heck?” look of confusion. He just  sat there with an open mouth of food like he was afraid to close it.  Then, he lowered his head and let it drop to  the floor. Then asked for another bite thinking it would be different I guess. Same reaction. He followed that with a few grunts and growls, as if to be chewing me out and asking “Where’s the beef?” and then walked away to sulk. At least he still has his Milkbones. In the long run it is for the  best, as I know he was eating foods he shouldn’t, but so were we.

In addition to healthier eating, we want to juice, but unfortunately the one we wanted could not be purchased locally. I ordered it online and it should be her sometime next week. The only reason I want to juice is because I want large volume of nutrients that can be provided by juicing. You would think being a cancer patient someone would have talked to me years ago about eating better.  Since they weren’t, I didn’t think about it either. I knew I should have been making better choices. However,  I had not reached my rock bottom until recently I guess. Food was my drug and I was addicted. We all are. It is how we were raised.

After the first week, I sleep better. I don’t feel as stressed. I am less bloated. I am more energetic. And, I have lost 10 lbs. All-in-all, its been a good week.

Veggie Tales

No, This is not a blog about the gospel signing, animated veggies that appeared on DVD. This is a story about my journey into the world of actual vegetables. I know I had to eat vegetables when I was younger, but not to a large extent that it was engraved in my brain. And even as an adult, there were many times my plate was veggie-less. However, today, my life is all about veggies.

Today is the second day that I have gone without consuming meat. So far I have not missed eating meat. I have enjoyed learning about and trying new foods like quinoa and brown rice. I have eaten rice all my life, but it has always been white rice. I am also discovering a whole new way of thinking and foods I never knew existed like Nutritional Yeast. I am excited to make the hour long trek to Austin soon and visit a Whole Foods Grocery store. We don’t have a Whole Foods n our town, and the Nature’s Grocery does not have all the options I have seen in some of the documentaries I have watched recently.

My transition has been made easier because my husband is making the change with me. Also, a good friend is making the change as well.  I think that having that support is important as opposed to going it alone. I think of this diet not as a diet but as my medicine. And frankly, the cost to eat healthier is less expensive than the medical cost I have already accrued. It is also less expensive than the cost of the chemo I need but can not afford.

Some people may think I am crazy and am taking a risk. They think I  should put my self in debt and then claim bankruptcy.  Seems like a simple solution, but then who is going to make up the $500,000 in losses to the hospital. I will tell you who, YOU! It is what drives up the cost. Just like at the local store down the street, if they have shrinkage (loss from stolen goods) they have to cover those losses. And that my friend is done by increasing consumer cost, in other words your cost.

I don’t know if this will work, but I have nothing to lose. It’s not like eating the veggies will harm me like the poison they pump into you when you are having chemo. I am fortunate that my cancer’s characteristics do give me some time to try to see if eating a healthier diet will change things. If not the healthier choices I am making will definitely help with my other health issues like cholesterol.

This whole journey is a learning experience. An experience that I have to take because of my Stage 4 Cancer. I am not saying veggies will cure me of cancer. I am not saying I will go in for a scan in six months and they will be gone. But frankly, if the new diet keeps them stable, I will be happy.

I Will Do It With You!

It has been a while since I sat down and blogged. This is mostly due in part to a depression that I was wollowing around in. This year has not been an easy year for me.  I felt as though every thought that was in my head was so negative I could not bring myself to spew anymore negativity out into the world. Then last week I received a text message asking me to watch a movie. It was followed by another text that said, “I will do it with you!”

Let me rewind myself a little, this actually all began about a month ago. A friend of mine was mulling around on Netflix for something to watch when she came across a movie called “Fat, Sick and Nearly Dead”. She called all excited about the movie and exclaimed, “I want to juice! You should watch the movie!”  I thought about it, downloaded it to stream, but never go around to watching it. The next day I received a message that said “It taste like vomit!” And the juicer was sent away. I should point out that my friend hates vegetables and there have been very few veggies that have crossed her lips in her lifetime until her attempt at juicing. At this point I deleted the movie from my queue. After all, who wants to drink something that taste that awful.

A few weeks went by when my phone rang. It was my father. “Are you watching the Revolution?” he asked. To which I replied, “Nope, don’t like the show so I don’t watch it.” He began to tell me about this woman, my dad is not good with names but remembered Crazy Sexy Cancer and said I needed to watch the show.  I have Tivo and my tuner was already set on the channel so I was able to rewind the past 30 minutes, so  I flipped the channel. There she was, a skinny, energetic happy-go-lucky blonde shoving veggies down a juicer. I sighed because I knew what he was going to say and I knew I was going to break his heart. “I am not going to juice dad, I know I won’t like it.” Needless to say he went on a campaign to change my mind, but I wasn’t listening. But, he doesn’t give up very easily when it comes to the important things like his children.

I love my dad. Things haven’t always been perfect in our relationship because we are so much alike. But he is the one that taught me to always be there for my family no matter what. And, if you mess with one Espinal, you mess will all of us. He is the one that taught me how to be strong. He’s not for everyone. Some people, or should I say one person, who is narrow-minded and, well, let’s just say lacks a sense of humor, finds him embarrassing. Some would say he is a natural flirt, so I guess I know where I got that from. And, some would say he is funny. He likes to joke, laugh and have a good time. He is the kind of man who if you ask him his opinion, he is going to give it to you his truthful opinion whether you like the answer or not, he will not sugar coat it.  But the thing I love about his the most is that we can always count on him. No matter what he has our backs. Not everyone is fortunate to have that, so disappointing him is hard.  When I said I didn’t want to juice I could hear the disappointment in his voice.

Last week I went to see my doctor at MD Anderson Cancer Center. My last treatment was done October 7th last year because of several complications I had after receiving an emergency surgery. Prior to the chaos that occurred I was on a study for a drug that, while it was working slowly, was working. However, due to several surgery complications that they believe could be a result of being on the medicine, I was removed from the study in December. You were only allowed to have an 8-week gap between treatments. Anyway, I was going to see about making a plan to get back on track with treatment.

In order to move forward with a plan I first needed CT Scans. So, I downed some prednisone, zofran and benadryl followed by some oral contrast, can you “yuck”. Juicing can’t be as bad as that crap. Anyway, after choking it down I headed off to the table to have my innards scanned. I hate the process, but it is a necessary process. The next day I went to see my doctor with optimism. Things were great! Tumors had remained stable during the past couple of months, so no new growth. Another positive was that the doctor said she thought we could continue with Avasatin. I was happy because since 1998, it is the only drug that had ever worked. In January Dr. Brown did not think it was a viable option. Then the hammer dropped and I was a mess.

The payment assistance that I thought was going to be there was actually non-existent. My heart sank to my feet. My share of the cost of the drug was $9,756 per treatment. I needed treatment every three weeks and probably for at least two years. That is just the medicine. I needed money to pay the doctor, pay for the process of receiving the treatment, money for meds they had to give me in conjunction with the Avastin. I needed money to see the ENT specialist, Nephrologist and my general medicine doctor because of the side effects that I have from it. I needed money to pay for the medicine to control the side affects. I needed money to travel to Houston to receive treatment. I needed gas money, which $20 used to fill my tank now it takes  $50. I needed money to pay for parking at the hospital. I needed money to pay for the hotel. And, last but not least, I needed money to eat while I was down there. Sadly, my piggy bank was empty. So, I then had to reconcile in my brain if I wanted to bankrupt my family and put them in debt for more than half a million dollars, maybe more, within the next two to three years. What do I do now? And, the depression set in until one day I received a text that said, “I will do it with you!”

So, I went to Netflix and downloaded  “Fat, Sick and Nearly Dead” along with the other movie my friend said to watch “The Gerson Miracle” into my Instant Queue, and ordered the DVD ” Crazy Sexy Cancer “. The stories hit home and I felt the need to try. After all, it won’t make things worse, getting extra veggies and I don’t hate veggies. It would help me to lose weight, which after years of abuse to my body, I have more than a few pounds I could stand to see go away. And finally, how can you turn down a friend, who hates the thought of consuming veggies and already referred to it as tasting like vomit, who was offering to do it with you.

So I have done some research. Have learned that lemon and lime help with the taste, as well as not using the rinds for them or grapefruit. And, this weekend the hubby and I are going out to buy the supplies and equipment to get us started. Yes, I said us. My meat and potatoes husband is willing to forgo his love of beef, starches, beer and chocolate to do this with me. Wish me luck and If you want to follow me on this journey, I will keep try to keep you posted on how it all goes.

If you can't read, just click on it to enlarge it. I don't know the name of the person that put this together but I know the wording is from the American Cancer Society