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Injury & Hospital Stay #3

7/29/2014

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I'm hanging out in the hospital again, stay number 3 since starting chemo.  I just completed my 4th round of chemo on the 21st of July.  I actually received a slightly smaller amount of chemo during round 4 due to my two prior hospitalizations so I was hopeful that I wouldn't end up here this time.  Let's back up a little bit so you get the story here, I was scheduled to come in this Friday, August 1st, and have a procedure completed by my interventional radiologist and my urologist, in this procedure they would attempt to place a stent by inserting a loop via my bladder and a hook via my nephrostomy tube hole and meeting in the middle of my ureter.  

On Thursday, I was asleep on the recliner on our couch and turned over.  Apparently my nephrostomy tube had been hooked in the recliner in my sleep and when I turned over it pulled the tube a pretty good amount.  I have done this before so, although it hurt, I just pushed the tube back in to where it should have been.  I went on with my day and traveled out of town two hours to pick up my son who was with his grandparents.  The pain increased throughout the day on Friday and on Saturday I decided that I was going to have my son stay with his grandparents because it hurt too bad and I wasn't going to be able to care for him.  My husband drove me back to Indy where I took medicine and went to sleep.

I called the on-call doctor to see if there were any additional things I should be doing to alleviate the pain, or any warning signs I should be watching for.  We discussed options and I went to sleep for the night.  On Sunday I woke up and was physically unable to walk to the bathroom without being in immense pain.  I looked at my nephrostomy tube bandage and saw that it had green/yellow drainage on it.  I decided it was time to call the doctor again.  We discussed the immense pain and new drainage, he decided it was time to direct admit me to the hospital.  I have to say that was an interesting thing on a Sunday.  Admitting isn't open on Sunday so I just came in, picked up the phone, and they told  me which room to go and check in to.

Sunday was full of tests, medications, and attempting to nap.  I was able to eat until midnight, but after that I couldn't eat or drink just in case urologist or the interventional radiologist decided to do a surgery on Monday to attempt and place the stent and/or repair any damage I might have done when I pulled the tube.  I knew the tube was still in tact because it was draining.

Monday afternoon they took me down to meet the interventional radiologist, he reviewed my files with me and said he was going to attempt to place the stent but that he would be placing another nephrostomy tube until Tuesday when he could verify if the stent was working properly.  He showed us what the nephrostomy tube was suppose to look like when inside, which is a pig tail:


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This is what the tube should look like.  When I pulled it on Thursday that loop opened up and the pointy end was stabbing me from inside my kidney.  It was horrific!  The X-ray on Sunday confirmed that is what happened.  So, they were able to do the procedure to stop that pain on Monday evening.

On Tuesday morning they came in to let me know that I had a staph infection again (still?).  They said its possible the internal wound that was causing the staph infection had not closed up yet and caused it again.  I will be here a few more days while they try to determine which antibiotic to fight the staph infection with.  I'm hoping that doesn't entail going to the infusion center for ten days again but we shall see.

The stent placement was successful, however, my bladder was retaining urine.  When they cut the nephrostomy tube approximately 1 1/2 liters of urine drained out.  They were worried that the urine would continue to drain and leak outside my kidney so they placed a foley catheter for the next few days to allow the nephrostomy tube hole time to heal.  The interventional radiologist wants me to work with urology on the bladder retention issues now also.  The big win is the stent is placed and hopefully I will get the foley catheter removed soon too.
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CT Scan Results

7/21/2014

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1/2 way mark results are in!  The chemo is working!  The two tumors in my pelvic area are getting smaller, thank goodness!  I have two tumors in my pelvic area and they are both shrinking from the chemo combination I am currently on.  According to the CT scan my hydronephrosis is cleared up so theoretically they should be able to get a stent through my ureter on the next attempt.  The lymph nodes which were enlarged in my pelvic area are also getting smaller.  I had two lymph nodes on my aorta which are also enlarged.  The significant one was previously 8 or 9mm, it is shrinking and is currently 7mm.  I asked my nurse and she indicated they should be 2mm or smaller.  There is also now some fluid on my heart that we are going to monitor.  I am suppose to watch my heart and notify them of any new shortness of breath, fluttering, or chest pains.

The best thing to know here is the chemo is being effective!  Next scan will be in September and we will discuss further treatment plans at that point.  I may update this post in more detail when I have the CT results in front of me.

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There's a what in your back?

7/20/2014

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Since my cervical cancer reoccurrence was so far advanced, my right kidney was completely blocked.  We found out that there is a tumor which invaded the right ureter and blocked the urine from being able to get to the bladder.  On May 5th I had my first nephrostomy tube placed.  The interventional radiologist thought he might be able to get the stent in so he attempted again when I was under anesthesia already for my biopsy with the oncologist on May 9th.  They were still not able to get the stent in.  The interventional radiologist said we could attempt the stent placement again before the wedding after a few rounds of treatment.  On June 20th we attempted to place the stent a third time, this attempt went better as they could see that the tumor was shrinking but we were still unsuccessful at putting the stent in.  So, I still have the nephrostomy tube.  

The nephrostomy tube could be much worse for sure but it is still not ideal.  The most difficult part has been that I am unable to swim with my son, he is 5 and it is difficult for him to understand.  
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Hair, Hair, Everywhere

7/20/2014

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I had really long hair before chemo started.  I think the hardest thing I heard during my discussions about treatment was that I was going to lose my hair.  I know that might sound silly, I am fighting a disease that is deadly and I was concerned about my hair.  It was estimated that I would start losing my hair around day 10 after my first chemo.

My now husband, then fiancé, and myself had been planning our wedding for June 28th for about a year.  I had the realization at this point I would be bald by the wedding day.  I had a boudoir sessions scheduled to get pictures and make a book for a gift to my fiancé, at that point I decided to cancel it.  I couldn't justify the money, was losing my hair, didn't know how I was going to work, and just had a flood of emotions going on.  Well, my fabulous (now friend) Cindy told me to come on in and get pictures.  I really wanted to get some pictures of me in my wedding dress with hair, I got my fiancé to join me for pictures and we were able to get some pictures together in my wedding dress while I still had my long hair.  Below are three of my favorite shots from the wedding dress shoot, taken by Cindy Johnson Boudoir Photography, please check her out if you are in the Indianapolis area, she dose fabulous work!
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While I was in the hospital, I started losing my hair.  The day was May 27th, I had planned to have a "hair party" as I decided once it started to go I was going to shave it off.  The hospital stay was interfering with those plans.  I had to put off my plans for another day and deal with the hair falling out in the shower, on the pillow, and every time I touched it.  On May 29th I got out of the hospital and on May 30th I head to southern Indiana to my hometown, New Albany, and went to my hair appointment.  I was happily surprised to find out we were having a mini-party at the salon for my hair cut.  My son was able to help with cutting my hair by making the first big cut.  We cut off my pony tail so we could donate it.  He also got the opportunity to help with using the clippers on my hair which he loved!

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As the next week went on, my hair continued to fall out.  I decided on June 6th it was time to shave it the rest of the way off.  Below is a progression of the hair loss.  I have decided to embrace it, I wear scarfs sometimes but have found them hot so you can normally find me out without a scarf or anything.
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May 29tth
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May 30th
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June 5th
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June 6th
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2nd Hospital Stay & Then a Busy Week

7/15/2014

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I spent five days in the hospital last week.  I woke up Monday morning and was seeing brown/reddish urine in my nephrostomy tube bag, had tenderness around my tube site, and a fever of 100.3.  I called the nurse and she set me up to go and get labs, although since I have the neph tube I had to go to outpatient oncology to be able to draw the labs which they couldn't get me into until 4:00 in the afternoon.

At around 1:30 I spiked a fever of 101.4 and they decided to admit me.  Once I got checked into the hospital we discovered my fever had broke.  I felt pretty silly being at the hospital at that point, however about an hour later my fever was back with vengeance.  I had fevers ranging from 101.4 to 102.7 all evening that I couldn't break, even with the tylenol they gave me.  At 11:30 on Tuesday morning I had a fever of 102.7 which I broke in my sleep.  I didn't get another fever.  I saw the oncologist and infectious disease doctor daily while at the hospital.  They determined that I had a staph infection so I had to stay in the hospital to get the IV antibiotics four times per day until Friday.

At around midnight the nurse came into my room in a gown with a swab.  She said the labs were back and that I had MRSA.  The swabbed my nose and she said infectious disease would be in again on Friday to see me.  The infectious disease doctor was great, told me we could deal with it and hopefully keep me on track for chemo on 7/21.

This week I am going daily to an infusion center to get IV antibiotics to fight the staph infection/MRSA.  My son is home from vacation this week and has been oh so helpful at the infusion center.  The rest of the week is a busy week.  I have infusion and doctor appointment Wednesday, infusion, labs, and CT scan on Thursday, then infusions early in the morning Friday, Saturday, and Sunday.  I am hoping that we stay on track for chemo Monday as I really don't want to get off of schedule.

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My special helper, Wylee watching as the nurse accessed my port to start the IV antibiotics.
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1st Hospital Stay

7/13/2014

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I'm working backwards here, trying to document everything that has been going on.  My first chemo was on May 16th, it went well and didn't experience all the  side effects that were possible.  I was really tired a lot and couldn't do what I was used to doing in a day.  I used my nausea medication to keep on top of any nausea.  On day 10 after my first round of chemo I spiked a fever of 100.5, it happened to be Memorial Day so I called the doctor on call.  They wanted me to go to the ER and have blood work run to determine if it was a neutrapenic fever.  They determined it was, and I was hospitalized.  My ANC was .7, the normal range is 1.5-8.0.  The ANC is the absolute neutraphil count and it helps determine the amount of infection white blood cells are present.  I got a neutropena shot to boost my white blood count.  I was told at that point I had to stay until I was fever free for 24 hours.  It took 4 days for me to be fever free for 24 hours so I spent 4 days in the hospital the first time.  On day 11, the second day in the hospital, my hair started falling out from the chemo.  I am going to write a post about my hair so that is all for now!

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A little history...

7/12/2014

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I am currently having treatments once every three weeks of carbo/avastin/taxol. They take anywhere from it will take 8-11 hours.  As I mentioned before, this treatment is for a cervical cancer reoccurrence.

Here are some of the highlights of my journey so far:

Diagnosed with Cervical Cancer (due to bleeding with intercourse) - October 2012 Stage 1B2
Trachelectomy - November 16, 2012 (cervix removed and lymph node dissection).
Uterine Tear Repair - December 31, 2012 (I tore my uterus by lifting my son after surgery)

Blood in stool and urine beginning December 2013. Colonoscopy 1/18/14 indicated internal hemorrhoids, but no other concern. The blood in the urine continued intermittently, I would have bright red blood, sometimes only blood clots, sometimes strands of blood, and sometimes normal urine.

I was treated for an UTI with ecoli as the bacteria found in March 2014. The blood in my urine continued, I was referred to a urologist. Went to the urologist, they immediately were concerned about the possibility of cancer. We did a CT scan on 4/21/14. I met with the urologist on 4/22/14 and he said there were masses all over my pelvic area. My right kidney was completely blocked due to the tumor. He sent me to the hospital that day, I talked with the urologist and the oncologist resident. Since they were not going to do surgery immediately they released me that evening with an appointment with the oncologist on 4/30/14. At this appointment we discussed that the CT scans did not look good at all, which was surprising considering I had been in to the oncologist for my most recent exam on 10/2013. This was my regularly scheduled 6 month appointment.

Immediately he scheduled me for a biopsy and exam under anesthesia. I asked what else it could be, he told me it was cancer, there was nothing else that would be this large. 

On 5/5 I had a surgery to attempt to insert a stent into the right kidney. They were unsuccessful and I left with a nephrostomy tube and bag draining my right kidney. I was also scheduled for my biopsy and exam under anesthesia for 5/5 but the OR was full and we had to reschedule that procedure.

On 5/6 I had a surgery to put in the Baird PowerPort in preparation for chemo. That procedure went very well.

On 5/8 I worked a 1/2 day, it was hard but I am a teacher and state testing was going on so I really wanted to work at least a little.

On 5/9 we did the exam/biopsy under anesthesia with the oncologist. The interventional radiologist also came in and made a second attempt at putting a stent into the right kidney. They were unsuccessful with the right stent again, they actually had the stent threaded but when they went to flush it they realized it had actually inserted into the tumor and not the bladder.

So, the results of the 5/9 exam/biopsy indicated that the tumor extends from the uterus and is wrapped around the ureter. There are also three enlarged lymph nodes along my aorta.

I have since found out that the tumor has actually invaded the ureter, which is what is causing the blockage.

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Lets get this started!

7/12/2014

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I am starting this blog to help myself keep track of my journey through cervical cancer.  Hopefully this blog can also give other cervical cancer diagnosed individuals in someway.

I'm a 29 year old wife, mother, and teacher.   My son, Wylee, just turned five. I just got married on June 28th of this year and then had my 3rd round of chemo on the 30th of June (wedding plans had been in the works for a year, cancer obviously waits for no one). I am also a special education teacher at a K-8th grade school, I work primarily with the students in 5th-8th grade. I am currently battling a cervical cancer reoccurrence. I live in Indianapolis, Indiana.

I am not really a writer, so this blog probably won't be gripping the edge of your seat exciting but it will help me to log what is happening.


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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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