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Radiation, Cistplatin, and all that fun...

10/31/2014

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I am sitting here, just finished up with my 10th radiation session.  I have successfully completed two weeks of radiation.  The goal was to get back to work 3 half days per week, I have not been able to successfully do that yet but I have been able to physically get into work more so that is a plus in my eyes.  Day one of radiation was rough, I didn't feel good and didn't think to take my nausea medication.  I literally felt like my uterus was dying, which I guess, in a way, it is.  If I weren't already in menopause from the chemo radiation is throwing me full force into it.  I, however, had already started menopause this summer.  Once I realized I should take my nausea medication things got better.  My worst symptom so far with radiation and Cistplatin is the same as with my other chemo, I feel tired the majority of the time.  I also have what I can only describe as achy hips.

I met with the radiation/oncologist on Monday this week.  He said he had spent a lot of time with my scans and was able to explain them in more detail.  Basically the ideal situation would have been if the tumor shrank down in one piece, just getting smaller.  However, my tumor shrank down and broke apart into pieces.  What this means for radiation is that we can't do the megadose of radiation targeted at one specific tumor.  This means we have to do broad radiation and in five weeks we will do another scan to see what the next steps are.  This was sort of deflating news, we were hoping that we would be able to do a megadose on one tumor but we will work with what we've got.

This week I got a call on Tuesday that chemo was still scheduled for Wednesday but that we would have to re-run my bloodwork because my white blood count was too low.  When I got to chemo on Wednesday we re-ran the bloodwork and found out that I was neutropenic and wouldn't be able to get chemo this week.  I also talked to the nurse and we doubled the hormone I take (HRT), because the radiation has stopped what level of function my ovaries were doing and the hot flashes and night sweats were back.  Hopefully within the next two weeks the hormone will be doing its job.  

Back to the low white blood count, my nurse explained that most of our white blood cells are developed in the large hip bones which are now being radiated.  Basically my body isn't producing white blood cells fast enough to keep up.  So, the first thing to go is chemo.  I had to skip chemo this week with the hopes of doing it again next week.  In the mean time, I have to limit going into public, wear a mask, and all that fun sort of stuff.

Today is Halloween, I am getting dressed up and can't wait to take Wylee out trick-or-treating.  I will just take my mask and stay away from the herds of children.  Wylee is a ninja turtle, we did some local family trick-or-treating yesterday.

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How do you feel?

10/22/2014

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If you've ever had cancer, or really any life altering illness you might get sick of this.  It is hard not to, but i try to focus that most people who really ask are just expressing concern.  Do they want all the gory details, most no, however those close few do want to know how it is going.  

Well today I am feeling blessed.  That might seem odd to you when you consider a few things, I had radiation this morning, then chemotherapy (cistplatin if you know what that means).  I have two more radiation this week plus a surgery to replace a stent in my right ureter; a surgery I will need indefinitely every three months.  However, today I feel blessed.

I am blessed that I have so many supportive friends, co-workers, and even strangers who ask me "how are you feeling today".  I am blessed that I really and truly enjoy my chemo nurses and do not ever dread going to chemo.  I like having time to chat it up with them and share things with them.  I am blessed today that I was able to talk to several family members.  I am also blessed that I was able to go into work and sit and chat about things I love about my job/school with my boss.  Most people would not think that is a blessing but I voluntarily went in, after a day of radiation and chemo and chatted for 30 minutes with one of my bosses, my life is a blessing.  I even had a co-worker call to chat with me this evening just to let me know she is thinking of me and prays for me.  We may not all have the same religious feelings but I still appreciate the support people show in whatever way they feel most able to show support.

I am so appreciative of the amazing photo sessions, plural, I have had with the amazingly talented Cindy of Cindy Johnson Boudoir Photography.  I think her now as a fabulous friend and she isn't feeling to well this week so I am thinking a lot of her.  Check her out if you are in need of photographs, she is amazing and an inspiration of happiness!  https://www.facebook.com/cindyjohnsonboudoirphotography

I am also amazingly appreciative of the support that has been shown on the support page setup by a few fellow parents and staff members from my school.  They have far exceeded their goal of making a staycation for my family to get to do all the fun things that people take for granted when they are not ill.  I didn't get to swim with my son this summer, it was hard on him, and in turn hard on me because he just wanted me in the water.  They have been raising money to send us to an indoor water park, dinner, and the movies.  Over the past few days there has been an amazing turn out.  They extended the page if you are interested:  http://www.youcaring.com/help-a-neighbor/support-erica-frazier-and-family-/234458 

I am now wired, I'm assuming from the steroids I was given at chemo and my entire family is snoring away!  I guess it is time to attempt to sleep.

Thank you all again for being fabulous and know I appreciate each and every one of you even if you don't know how to talk to me about this subject I feel your thoughts, prayers, and good juju.

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Next Treatment Plan

10/19/2014

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This past week has been a waiting game.  On 10/6/14 I had an MRI to help with staging; on 10/7/14 I had my radiation planning CT scan appointment.  It was really interesting, they created a mold of my legs which will help me to stay in position during radiation each day.  The mold is somewhat like a pool float and supports my legs.  They also placed eight marks on my abdomen which will be used to help align the machine during each session.  They told me that at my first treatment they will put more permanent marks on my abdomen which will stay on for alignment purposes.

I spent the last week waiting to find out when the new treatment would start.  I heard on Thursday that it would most likely start next week on 10/20/14.  I talked to my gyn/onc nurse and we got chemo setup to be on each Wednesday, we will be doing Cistplatin this time.  On Friday I got word that I will officially be starting radiation on Monday the 20th.  So, here is the next stage of treatment:

  • Monday-Friday daily pelvic radiation
  • Weekly meeting with my radiation/oncologist
  • Monday bloodwork to ensure I am okay for chemo
  • Wednesday chemo, in addition to radiation
  • At least six weeks of treatment


This week I also have a minor surgery on Friday where they will go in and replace the stent that is in my ureter.  This has to occur approximately every three months to minimize risk of infection.

Looking forward to starting this next phase of treatment.  It was really hard waiting for the new treatment plan to start, this feeling that I had been actively fighting this cancer for months and then just sitting and waiting while it was still there has been very hard.  If I handle the radiation/chemo well I could even get released to work partial days on non-chemo days! 

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Hanging out with Wylee at our school, this is the school I work at and Wylee is a student.  
Paramount School of Excellence in Indianapolis, Indiana.
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Breaking Point

10/3/2014

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Today I had a breaking point, unfortunately that breaking point was at approximately 11:45 am.  I started out my day with my new fabulous doctor (see my previous blog).  However, there is some background, I have been sick this week.  I have had, what they determined, was a sinus infection.  The fun part about this sinus infection is I started with a 101.1 degree temperature Monday night, woke Tuesday to 103.2 and topped out at 104.4 (I just quit taking my temperature at this point).  JR was on an install far away and all my friends I could think to call to just stop and grab my meds were at work.  To be honest, I didn't really have the energy to call them anyway.  I would see an email, text, Facebook post, etc and just sit my phone back down.  I didn't even turn the tv on.  I spent Tuesday in a fog of sleep, drink a bottle of water, go to the bathroom and repeat.  I didn't even attempt to eat, my fever made that impossible.  My Tuesday night I started Amox-clav which has done wonders.  I still have a fever off and on Wednesday so I spent the day in bed.  I am much better at knowing if I just stay in bed and push fluids it will get better.

Thursday I was feeling much better.  I stayed in bed until around ten and decided to head to work for a while.  It didn't start out well.  I headed North when I work South (obviously I know this).  I passed the exit for where I was trying to go then the Taco Bell/Pizza Hut I had committed to for lunch because I wanted pizza was now just a Taco Bell.  It didn't end there, I went the wrong way and got stuck in the exit and couldn't enter the drive thru, so I just backed up.  I ordered and proceeded to work.  While Wylee was on recess I went to tell him that he was going with the YMCA after school, which he loves.  He cried because he wanted me to stay, in retrospect that is because he was sick but we didn't know that yet.  Work went well, I was able to work with a student and felt productive.  I attended the faculty meeting and was even able to check in on the tutoring program which is incorporating robotics.  How awesome!

Today, the breakdown, 11:45.  I'm driving Wylee from his doctor appointment and we pass the outdoor water park that is approximately 3 blocks from our house.  "Mommy, why didn't we go to that park this year", well buddy remember Mommy has cancer and had the tube and couldn't swim sounded like the lamest true excuse ever but I had to say that because, it is the truth.  Then as we are driving "Mommy, when you don't have cancer can we go on vacation?"  At this point I'm in tears, I'm not a cryer.  That is my rule we my friends, we don't cry about this.  It is hard to do with your five year old though.  I tell him "Of course we can go on vacation and we will celebrate when Mommy doesn't have cancer."  I called JR, I don't even know what about now as he was on his way to a funeral but he asked if I'm okay and for once I said "no, I'm not".  At that point there was nothing to be done though.  So I got Wylee and I lunch and headed home.

It was also a hard day because although I know cancer kills people, and I appreciate my doctor's complete honesty.  It was hard to hear "we need to kill the cancer before it kills you."

I have also had a hard day because my Papaw is sick, and isn't going to get better.  He was my first best friend.  I spent all my time with him.  We did simple things like going to mow for "the old ladies".  We would go to Kroger and I would get quarters for candy.  I remember sitting in the back room (which was a living room back then) trying to come up with new creative ways to say I wanted to watch channel 33 to "trick" him.  33, 3      3, Nick, Nickelodeon, like he didn't know that it was all the same channel.  I remember making green beans with potatoes.  Smoked sausage with awful sauerkraut I still don't eat.  I have fond memories of going with him out to Uncle Steve's house.  It hurts so much that I live far away from him in his time of need.  It hurts that my health prevents me from coming as often as I want.  It especially hurts that I wanted to go this weekend but now Wylee and I are both sick and I can't risk making him sick.

It hurts that I know I can't have anymore children, even though I didn't know for sure that I wanted more now that is taken from me.  Cancer has taken that from me.  It is hard to explain to a five year old why he isn't going to have a little brother or sister like he wanted.  We told him, wait until after the wedding.  Then the cancer came back.  Now he doesn't understand why there can't be a baby once the cancer is gone. 

It hurts that now that it is October everything is pink, I can only hope I can continue to make an impact and in January which is cervical cancer awareness month specifically someone will realize it.  Ironically as I am typing this there is a Kroger ad playing in support of breast cancer and using pink tags to signify donations to breast cancer.  I'm not saying breast cancer research and support isn't important; but, do you know what else is important?  Cervical cancer research and support.  Woman are dying of this cancer still.  Un-needed deaths.  People going undetected, not thinking it can happen to them, not knowing the symptoms.

Cancer hurts, sometimes it is overwhelming and it was just that type of day.  Tomorrow is a new beautiful day and will be treated that way.


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Setting Up a Plan Round 2.1

10/3/2014

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I met with my new oncologist this week, who I think if fabulous, Dr. Callahan.  It just so worked out that my case was on the hospital "tumor board" the same morning as my appointment so all the details and questions he had for me were fresh in his brain.  The first resident came in and got a timeline of my crazy story from when I first started seeing symptoms when I was diagnosed round 1.  We went through everything from October 2012 until now and then she said he would be in as soon as possible.  He was in rather quickly considering I knew he was fitting in several additional appointments that day.  

He came in, we did a quick abdominal exam and started our discussions.  As I had planned, leaving it alone to see if the chemo in my system continued to shrink it wasn't even an option discussed.  Option two was continuing with the same chemo, which we breezed over.  We really discussed moving forward to Cistplatin chemo once per week with radiation five days per week.  We asked a few questions, main one being are we burning a bridge by using radiation now.  What if we have another reoccurrence.  In short, we have to deal with what we have now or it won't go away.  So, on to meet the radiologist/oncologist.

Today, Friday, I met the my radiologist/oncologist, Dr. Dugan.  He is fabulous also!  We went through the entire medical history, did an internal exam, and got started talking about what his treatment plan would be.  He explained that I was on the tumor board Monday and his first question was "has she had rads?" because the location and size of the tumors now makes me a perfect candidate now.  He took time to explain before that my tumors and lymph nodes which were impacted were too large and spread out and that we couldn't do radiation before.  The chemo has been successfully doing its job and now it is time to let radiation do its job.

He explained that with continued chemo we would never fully eradicate the disease.  Radiation is the way to get rid of the cancer.  At 29 we want to "get rid of the cancer before it gets rid of you".  He wants to attack this aggressively, which I 100% agree with.  We are looking at 6+ weeks of radiation.  Most likely only external but won't know for sure until he does a few more tests which I have scheduled.

There is a mass on my left side showing up, it isn't showing up as a cancer color on the PET scan but he wanted to look further into it so we are doing an MRI on Monday.  The mass on the left side could just be an enlarged ovary.  I appreciate that he is being extra cautious.  

Tuesday I have a CT Simulation/Planning Session.  During this session basic treatment marks will be placed on my skin for where the treatment will be.  If a positioning device is needed (to make sure I am in the same position each time) the measurements will all come from this CT scan.

Planning time comes next, all the information gathered from the MRI and CT scan will be used for the Radiation Oncologist to determine the dose and number of treatments I will receive.  This planning time can take up to five days.  After the treatment plan is approved I will get to setup my schedule.

I will need to go in for a verification day.  On this day the radiation therapist will take additional films and measurements on the actual treatment machine to ensure that all the information from the planning session was accurate.  Modifications will be made as needed.  During this time I might get the marks placed back over my treatment area.

I will get to meet with my radiation/oncologist weekly during these treatments, that made me feel better in case I had more questions that I didn't ask today.

Today was hectic.  While I was signing into the doctor office I got a phone call from Wylee's school that he had a fever so JR had to divert and pick up Wylee so I attended the appointment alone.

I found out that the immediate effects of radiation will be fatigue, bowel, and bladder concerns.  These are symptoms which will build.  The long term effect to consider was a possible bowel obstruction which would need surgery.  He feels confident the radiation will not impact my joints (hips in this case).

However, since I am going to be in full blown menopause I will need to continue my HRT (hormone replacement therapy) and should consider starting calcium supplements.

There was a lot of dry, medical information here today.  It is, however, the questions everyone has had so far.  I am going to do another post. Maybe immediately after this about a more emotional side.  This is medical and should hopefully answer some questions.

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    Author

    Erica is a 32 year old cervical cancer advocate who is out living cancer for the third time. When she isn’t advocating for cervical cancer and HPV awareness as a Cervivor Ambassador, she previously oversaw the STEM program at the school where she was an educator; she now helps coordinate the robotics program. Erica enjoys spending time with her husband and son in their Indianapolis neighborhood, as well as pursuing new and adventurous hobbies. She can most recently be found fawning over kayaks and daydreaming of returning to whitewater kayaking with First Descents, an organization for young adults impacted by cancer. 

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