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Results are in...

9/24/2014

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Today was the day, I got the call.  My nurse called to tell me that my scan results are in. I had a strong feeling that the cancer was still present and it is. The lymph nodes on my aorta are continuing to shrink. The mass on my right side started out at 5.9 cm in April. At my 1/2 way mark that mass was 3.6 cm. At my most recent scan the mass is 2.0 cm. There are several cells in my abdomen which are still active cancerous cells; they are smaller also. I am meeting the oncologist on Monday to review all the results. In the mean time he plans to meet with the radiologist and review more specifics about the scan. Basically we have three options to discuss: one wait and see if the chemo continues to work, two continue the same course of carbo/taxol/avastin since it is shrinking, or three move on to a chemo/radiation combo. I'm not leaning towards the wait and see option, I would rather be proactive.

I am still not released to work until we discuss further treatment options but I was able to go in today and get some work done.  That helped me keep my mind off of everything going on.  I was fully anticipating that the cancer was still present and figured if it wasn't I would be pleasantly surprised.  Today wasn't as bad as I anticipate the next few days of waiting will be.

I have started the process of researching side effects for radiation, since that is the only treatment I haven't had and do not know much about.  There is such a wide variety of experiences people have with radiation it is hard to tell how my body would handle it.  I am really looking forward to the doctor's opinion.  I do know that if we go the carbo/taxol/avastin route I am going to ask for the full dose.  They cut my dosage starting with round 4 due to the fact I was hospitalized during round 2 and round 3, however I ended up being hospitalized after round 4 and round 5 anyway so I would prefer to get the higher dose and chance a hospital stay.  We will see how it goes.  Time to work on a list of questions for my doctor on Monday.

Looking forward to Monday and having more direction.

I also wanted to thank our school community organization for meeting and working to setup this support site for my family.  We weren't able to go to any swimming or outdoor water fun this summer as a family because I had the nephrostomy tube and couldn't get in the water.  We went, so my son could swim but he really wanted Mommy to get in too.  His one request has been that we go to the indoor water park once the tube came out and Anna and Jessie worked to set this site up to help support that:  http://www.youcaring.com/help-a-neighbor/support-erica-frazier-and-family-/234458 

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Patience is a virtue…I don't have

9/23/2014

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Yesterday, September 22nd I went in for my PET/CT scan to determine if the treatment I have been going through has been successful.  I had 6 rounds of carbo/taxol/avastin chemo.  I started treatment in May and completed my last chemo in September on Labor Day.  This scan is suppose to tell us if there is any cancer present in my body.

Have you every had a PET/CT scan?  This is the second time I've had cancer so I had this type of scan before.  I was with a different doctor at a different hospital at that time (due to insurance).  The one great thing they did was offer music to be played.  They had a selection, basically options of Pandora stations, to choose from.  I got to choose a style of music and listen to it during my scan.  It really helped to keep my mind off of what I was laying in this tube for.

This scan was a different experience.  I want to describe the process for those of you who are fortunate enough to have never had this type of scan.  I had to arrive at 11:45 for my 12:00 scan.  They promptly called me back at 12:00.  The technician was unable to access my port so we had to wait for the nurse.  The nurse got there at 12:20 and was unable to get the blood to flow (not an uncommon occurance).  We worked our way through the tricks like turn your head to the left and cough, raise your right arm, etc.  Eventually we had my lay flat, which I told them from the beginning is what we would need to do to draw blood from my port.  Again, not my first rodeo here, we have drawn a lot of blood from my port and that is the best position for getting it to draw.  At 12:30 they were able to infuse what they described to me as the radioactive fluid into my body.  Let's think about that for a moment.  Radioactive fluid is being pumped into my body.  What other disease is there that it is safer to inject radioactive fluid into someone than to let the disease be.  Seems crazy to me.  Up next is the 1.5 hour wait for the fluid to make its way through the body.  They told me to empty my bladder completely, so JR went and got my self-cathetering supplies so I was able to.  I went in for the scan.  During the scan they strap your arms down to your side and also strap your head down so you don't move it in either direction.  The technician told me that I would be scanning for 28 minutes, he said that 28 minutes makes people feel better than 30 minutes.  Quite frankly a little music would have made me feel better.

When I was in the silence of the tube all sorts of things ran through my head.  First off, my face itched almost immediately once my arms and head were strapped down.  Up next was the thought of what if this PET scan lights up like a Christmas tree.  For those of you that haven't seen The Fault in our Stars that is a direct reference to the movie.  I enjoyed the movie and didn't cry like a baby, I suggest people see it.  It was a good movie.  Back to the scan, basically my mind rotated through face itching, how bad the scan results could potentially be, to why isn't there any music in this scan.  This went on for 28 minutes, not 30 as my tech pointed out.  The technician then took the scan to the radiologist to review and they determined I needed to do an additional scan.  They injected me with lasix, which is used to flush out your kidneys.  They did this because the radioactive fluid had built up in my stint that is in my right ureter connecting my kidney to my bladder.  I then had to wait forty minutes for the flush to work and do an additional ten minute scan.  I've got to say, this scan was worse.  They were only scanning my pelvis this time.  The thought kept running through my head "why is this spot taking so long, why haven't they moved to the next section, is it bad, what is the tech seeing".  So many questions, with no answers.  

I'm honestly not feeling good about the results at this time.  However, anything has to be better than this not knowing.

I was originally scheduled to see my oncologist this Thursday to review all the results from the scan, however, last week I received a call that my oncologist was no longer available due to unforeseen circumstances.  They offered the two other gyn/oncologist in the same practice for me to choose from.  I had the opportunity to meet both doctors during one of my four hospital stays during my treatment.  I choose to switch to Dr. Callahan.  This means that my follow up appointment had to be moved to September 29th.  The nurse will, however, be calling me to review the scan results.

Today was stressful, I was waiting to hear the results.  I called this morning to speak with my nurse and see when I could anticipate the results.  She said hopefully by this afternoon as it typically takes 24 hours then she has to review it with the doctor before calling.  She wasn't able to call this afternoon so I anticipate hearing something tomorrow.  If I haven't heard from her by lunch I will call her again.

I did buy a new book to keep my mind off of things, and it has really helped.  It is called The Maze Runner and I am power reading it.  I am currently about 56% of the way through but I took a quick break to write this up.

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Checking with the Doctor

9/17/2014

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It is funny to me that once you have cancer even the smallest symptom is something you feel compelled to call the doctor about.  Things that if it happened to you, and you never had cancer, you wouldn't think twice about.  Today I had to call the doctor because over the past few days I have had dried blood coming from my nose, not free flowing blood like a nose bleed but random dried blood.  As I am calling the nurse I remember that I have also had multiple headaches over the past few days and random dizziness when getting up.  Now, do I think this is something that is a huge concern, no.  Could I be wrong, yes.  So, I call the oncologist just in case.  I full expect them to say I just need to drink fluids, rest, etc but I have been wrong before and ended up in the hospital for five days because of it.

I think that this need to touch base with the doctor will continue after I beat this cancer.  As you may know, I had cancer before in 2012.  I was treated and declared cancer free in 2012.  My symptoms then were bleeding with intercourse and a clear discharge.  That is all, no pain or anything else.  My symptoms for my reoccurrence went ignored for a few months before I went to the doctor and even then I didn't call my oncologist first.  I wish I would have, we could have caught this cancer earlier and maybe it would have been operable.  I never really thought about it because it won't change anything now but if I had called earlier, would it have been operable?  I have reasons I didn't call the oncologist, none of which seem important now.  I didn't call the oncologist first because I had seen him in October.  I had switched to this doctor due to a change in insurance and he was so different from my previous oncologist I honestly felt like he would not want to be bothered with something that I didn't think was cancer related.  I didn't call my oncologist first because it was blood in my urine, which means it was coming from my bladder, a totally different location.  I didn't call my general practitioner at first because it was Christmas when it started and honestly when I got around to calling the blood had stopped.  I even saw the doctor for blood in my stool and didn't mention the blood in my urine because it hadn't been happening the week before so I thought it was done.  Then, the blood in the urine started again, but I was busy, so I didn't call.  I kept getting sick, just little cold like symptoms here and there but I'm a teacher, so I just figured the kids were getting me sick (it happens).  My boss at one point told me I needed to get checked out because I seemed sick at work frequently (notice I wasn't taking off for these cold like symptoms, I was working).  When I finally did call they got me in right away, they treated me for a UTI but the blood continued through the antibiotic and after.  I called about a week after the antibiotic ended and they referred me to an urologist.  It took about a week for me to be seen and then everything was put into motion.

So the question still lingers, if I had called earlier would my reoccurrence not be as bad?  Would it have been operable?  We won't ever know but there is one thing I do know.  I will call, even if I think that something can't be related I will call.  The first time I had cancer I was stage 1b2, although the don't officially restage cancer for a reoccurrence this stage would have been 3b…if it comes back (after I beat it this time) I am in trouble, it's already in my lymph nodes which means it can travel (already has).  So I know, I won't wait around, I will call right away.

I hope that someone learns from my experiences.  Below is a chart that describes symptoms of a variety of gynecological cancers, be sure and do not disregard symptoms.  Get checked!

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Last Scheduled Chemo

9/10/2014

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Labor Day was my last regularly scheduled day for chemo.  I received a phone call last week telling me my counts were low and I might not be able to receive chemo; the plan was for me to go to the scheduled chemo and do labs again.  Thankfully my counts were up by chemo time and I was able to do chemo.

I had a busy weekend so I slept most of the day for chemo.  Since it was a holiday it was a pretty quiet day at chemo with very few patients.  I got to chemo at 8:00 and was the last patient there when I finished up around 5:00.

I wasn't prepared for the emotions I would have when I was finishing up this chemo treatment.  The nurses I have at chemo have become friends I had been seeing every few weeks (more frequently when you consider I kept getting hospitalized in between treatments).

We joked about me "ringing the bell" because I was literally the only patient there.  My nurse Melissa went and gathered up a big group of the nurses I have come to know though and I ended up with quite a nice group to "ring the bell" in front of.

I cried, just a little, which I didn't expect.  It was like the ending of an era I guess?  Now I am waiting on scans to find out if treatment is completed or if additional treatment is needed.  At this point I am assuming more treatment will be needed, there has been discussion of radiation and/or more chemo but we won't know until my PET/CT scan.  My scan is scheduled for September 22nd with a follow up oncology appointment on the 24th to review the results and discuss future plans.

Post by Erica Frazier Stum.
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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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