Angry

I am angry today. I have been thinking about Sarah, and all she went through as I sent her story off to the 15-40 connection.  They are an organization that helps young adult cancer patients/survivors.
I am angry that she had to go through the experience of having cancer.  I am angry that life isn't fair.  I am angry that some people are mean, especially if their meanness is directed at my daughter.  These angry days do not come as often as they used to, but they do still come.  Hopefully I will snap out of this angry mood quickly!

I will never forget Sarah's story, in case you have, here is a recap.  Remember, the moral of the story: Know your body, if you don't feel right go to a doctor and don't stop until someone listens!

Sarah’s story:

 In 2011, after Thanksgiving break, my 19-year-old daughter, Sarah, went back to college to finish the first semester of her sophomore year.  She was focused on final projects and exams, determined to do well. She called us several times complaining of a stomachache and stress.  There were times when she was so upset, even her dad couldn't get her to calm down, we attributed those outbursts to the stress and planned on having her talk to someone over winter break.  The first weekend in December, Sarah called and said her stomach and head really hurt, we told her maybe it was her appendix, and she should go to the emergency room and then call us.

Imagine, at the time the worst thing we could think of was appendicitis!  Sarah called us and said the hospital did all kinds of tests, including blood work, a pregnancy test, and a cat scan of her abdomen.  They couldn't find anything wrong and sent her back to school.  I went to see her the next day, took her to lunch, gave her a pep talk and headed for home, she seemed no worse for the experience.  One week later Sarah babysat for her cousins and had a great time, when she got back to school she felt nauseous and vomited.

She felt sick the next day, but thought she had picked up a little bug from the cousins, finals started that Tuesday, 12/13/11 and she was headachy and stressed.  Being my usual helicopter Self, I made the necessary calls, got her out of her exams, and prepared to go get her that day. True to form when the Dean of students called to let her know she was excused until after break, my little fighter told him, "no way, I am not waiting, I do not want to study over break, and I will take them now,” so much for mom's help. Sarah’s brother Greg picked her up on Friday 12/16/11 and they headed home, looking forward to a fun winter break.  Alas, Saturday came and Sarah was again not feeling well, so instead of relaxing, she went to her first of many doctors’ appointments.

A tired, stressed out 19-year-old goes to the doctor; she says she has a headache and feels nauseous, he says flu.  As the symptoms continued we paraded Sarah to a host of other doctors: orthodontist for possible TMJ, psychologist for crankiness, back to primary care, this time they said strep, and did blood work for mono and Lyme at my insistence; then onto the gynecologist, we thought maybe her hormones were out of whack.  Through all these attempts to figure out what was wrong, Christmas and New Year's came and went, and poor Sarah basically slept through it all!! Finally on January 3, the primary care doctor called and said that Sarah had Lyme disease and a prescription was being called in to the pharmacy.  Finally, we knew what was wrong; Sarah would take medicine and would soon be well!  Still barely eating and vomiting, Sarah took her meds and kept on sleeping. The next afternoon, Greg noticed that Sarah's pupils were dilated, when I looked it seemed as if she was crossing her eyes, so off to the eye doctor we went.  While examining Sarah's eyes, the doctor noticed swelling behind her eyes and a change in her vision, since she supposedly had Lyme disease, he called an infectious disease dr. and got us an appointment for 9am the next morning.  The ID doctor was not convinced that Sarah had Lyme, and was considering doing a spinal tap, until she checked with the eye dr.  After hearing his findings, she immediately called a neurologist and set up an MRI appointment for that same day. All Sarah wanted to do was sleep, but we dragged her to "1 last appointment," famous last words!  The MRI was scheduled for 2 pm, it was an open MRI, so I stayed with Sarah, and we were there until 3:30 pm.  At this point none of us had eaten, we were all tired and cranky and just wanted to go home!  At 3:45pm my husband’s phone rang, and our lives were changed forever!  We were instructed to go directly to Overlook Hospital where the Neuro team would meet us.  I think we were both in shock at that point, we went through the motions of getting her admitted: Neuro Critical Care, our baby was really sick.  Later that night, after Sarah was hooked up to several monitors, and tests were scheduled for the following day, the reality started to sink in.  I stayed at the hospital with Sarah and my husband went back and forth.  Our days were filled with fear, hope, and anticipation as Sarah had test after test to determine what the mass on her brain was.  After Six days filled with 2 MRI's, a cat scan, a burr-hole biopsy, an EEG, several neurological evaluations, and more blood work then I can count, we went home armed with steroids and anti-seizure medicine to await the pathology reports.  On Monday 1/16/12 we got our answers, we headed back to Overlook Hospital, this time we were instructed to enter through the Carol Simon Cancer Center, I will never forget the look on my daughters face as we stood in front of those doors, she just stopped, looked, and said, "You never told me that I had cancer!"

Sarah was diagnosed with Primary Central Nervous System (PCNS) Diffuse large B-cell Lymphoma, (cancer in her brain).  This cancer is extremely rare, and almost unheard of in someone her age, most patients are well over 60; therefore going the pediatric route was not possible.  We went to the Cancer Center at Overlook Hospital, as well as to Sloan Kettering in NY; Doctors at both facilities recommended a regiment of chemotherapy.  We chose to stay at Overlook Hospital.  Phase 1 lasted for approximately 4 months, with 4-5 days out of every 14 spent in the hospital receiving the treatment, of course there were also many "outpatient" treatments/tests done as well.  There was so much information to digest, Sarah was very sick, treatment started immediately.  Although we were able to see a fertility specialist, there was no time for anything to be done.  Sarah had a port inserted in her chest to facilitate the treatments.   After her first treatment she was given Neupogen shots to increase her white blood cells in preparation for stem-cell collection.  We had to plan for Phase 2, the stem-cell transplant, before even starting phase 1.  I kept a notebook full of all of Sarah's medical information with us for every appointment; it filled up fast and was extremely helpful. The doctors and nurses were very impressed.  Sarah made it through phase 1, and went on to have her stem-cell transplant.  There were many emotional outbursts as she tried to comprehend what was happening to her. Over the span of 1 year, my beautiful girl was subjected to numerous tests, needles and treatments; she lost her hair and the steroids made her puffy and a little crazed.  Sarah had to miss 2 semesters of college, which was unbearable for her to deal with.  I am proud and happy to announce that Sarah was able to begin school again in January 2013.  She still has MRI’s and blood work every 3 months, but is doing well. 

This all came about so suddenly and unexpectedly that we as a family are still trying to digest it all.  

I now know more about cancer, drug regiments, medical tests, etc. then I ever thought possible.  Cancer is a horrible, life altering disease; but I am proud to say that my daughter fought her way back to health and is a stronger more determined young lady for the experience.