Monday, January 20, 2014

My Story by Michelle Gordon

My Story
by: Michelle Gordon

September 23, 2013

I would first like to start off by introducing myself and warning you that English and writing was never my strong point.  I tend to wander with my thoughts and even more so these days with all of the medications I have been on.

 My name is Michelle Gordon and I am a happily married woman with 2 children and a fantastic life.  I can easily say that “I have it all”!! I have a husband that most women would do anything to find, he not only cooks, cleans and does the laundry but he also works hard for his family and loves me unconditionally.  I have two beautiful children, Marcus is 12 and Sophia is 5.  I could write an entire novel about my children and how wonderful they are but for now you will have to take my word for it!  I work for the New York State Office of Mental Health as a budget analyst and cannot express the love I have for my work family.  Since my diagnosis, I have had nothing but love and support from all of my friends at OMH.  Life was good and uneventful, peaceful and comfortable until fall of 2011 when a common constipation issue turned into something much more.

One of the most common questions I get regarding my disease is “what were your symptoms” and to that I would say the following:  I had what most would consider normal constipation with the feeling of not being able to evacuate completely.  I did have a few incidents of blood but it was always bright red and I wrote it off to possible hemorrhoids.  However, in the fall of 2011 I started having this pain and numbness in my lower back which was always worse at night and when I laid down.  I researched this issue and tumor appeared on all the reputable sites out there.  This of course had me concerned to the point where I pushed for a scan.

February 6, 2013 was the official beginning of my journey, although I didn't know it or better off, wouldn't accept it at the time.  I had gone and had an MRI done of my abdomen and had received notice from my doctor that they had indeed found a “concerning mass”.  This was immediately followed with heart palpitations and the need to leave work and find my husband.  We both cried and then calmed each other down with all of the other possibilities or more like-lees it could be.  We were in complete and utter DENIAL!  We would remain in this state until we had concrete, hard evidence otherwise.   After all, how many 34 year old, healthy young women do you know with cancer?

The next 10 days were a whirlwind of tests and procedures.  I had a colonoscopy done in which they couldn't even get the scope past the mass.  They did a biopsy and the doctor called me back to let me know that it came back not as cancer but as “villotubular adenoma with nests of severe dysplastic cells”.  This, of course, just supported my state of denial even after the doctor told me not to get excited, he was still 99% sure it was colon cancer.  I remained in the 1% not cancer.   Emergency surgery was performed just days later on the 13th, were they removed my uterus, my cervix and the top of my vagina.  As a side note:  I found it ironic how it took me over 2 years to convince my husband to go have a vasectomy and only a few months later I have to have my uterus out anyway!  I thought it was worthy of a chuckle, not sure hubby saw the same humor.  The surgery took the better part of the day and I woke up with a new friend on my stomach that I would have to get used too, at least temporarily.

February 17, 2012, Diagnosis: Stage IV colorectal adenocarcinoma or T4b, N1, M1b.  BAM!!!!!!!!!!!!!!  I had so many questions at this point that my head was spinning.  Was this payback for something I had done?  What happened to karma?  Is this genetic, what about my siblings and my kids are they at risk?  Crying became my hobby and Kleenex had a new top supporter.  Oh yea, remember that Michelle that hated taking any type of pill at all, well Xanex became my very best friend.  My world was flipped upside down.  I felt like my family and I were trapped inside one of those little snow globes, being shook by a very energetic 6 year old boy on Christmas morning.  The stay in the hospital was pretty uneventful, I had to learn how to take care of my colostomy, recover from surgery and try to get some sort of plan in motion for my future battle with cancer.   I had a port placement procedure done shortly after and it was decided that I would move forward with chemotherapy.

It seems appropriate at this time to talk about one of the most important pieces of my life I like to call The Tree of Me.  The tree of me represents the roots or people in my life and how they support me.

I have Mark, my husband, as a caretaker of me and more so of our children.  He had to become a mom and dad in one, a super parent and he did so with such ease, it is beautiful to watch.  My children that bring smiles and laughter to my face, a joy and light to my world when sometimes all I see is darkness.

My mother is my root of emotional and medical support.   She is there for me whenever I need an ear to listen and a shoulder to cry on.  During my times in the hospital when I couldn't take care of myself, she was there, with such a delicate and gentle touch, to make sure my hair was washed and I was comfortably adjusted in bed to get rest.   My father and second mother are my rational decision making and financial support.  They have sacrificed so much of their time to make sure that I am getting the best care possible by the best doctors.  My sister Sandra is my organizational root that has assisted me with anything technical needed.  She is my Google.  She has created a website that is dedicated just to me and my medical history.  It contains every detail from doctor’s notes to surgical reports to the actual MRI/Pet/CT scans, all available at the click of a button.  To those whom have had to deal with medical personnel on a more frequent basis, I am sure you can appreciate the value in having something like this.  My sister Jennifer is my spiritual root.  She has helped me to get closer to God and to have peace with my life and wherever I should go.  I know that I am safe in Gods arms.  My sister Jessica has her PhD and therefore acts as our medical interpreter.  Again, for those that deal with the medical world more often than others, this is a true asset.  

Lastly but by no means the least, my friends, extended family and community act as my water and sunshine on a daily basis.  There isn't a day that goes by where I don't thank God for this complete circle of support I have been afforded.  I think about the many in a similar situation that are missing a root or don't have any support at all.  Those are the people I would like to help with our non-profit organization Yes We Can Sir.  

Back to some more medical history on me.  February 24, 2012 marked the day we put our plan into action.    I say we because it is not only me that goes through this, it's the entire Tree of Me or we that goes through it.  We decided to move forward with 6 months of Folfox with Avastin, followed by radiation to the pelvic region and ending with a colostomy reversal.  I will call this plan A. Simple, easy; I can do this....right? I start off with both feet running, I still work while on treatment, most weeks more than 40 hours to make up for the treatment hours I missed.  I was nauseous, tired, suffered from neuropathy and cold sensitivity....all still bearable.  This, I would like to note is the first time I felt like a cancer patient.  I had to have my chemo treatments hooked up to me for 48 hours which meant I wore a pump around my waist while at work, while sleeping, while cooking my children dinner.  This pump made a noise that I will forever remember, a sort of cranking sound every time it pushed some more poison into me...makes me a little sick to my stomach thinking about it.  Not far into my treatments I hit a small roadblock, my white blood count dropped too low and I had to miss a treatment.  My doctor then put me on Neulesta shots which aid in keeping your white blood count high enough to continue treatments.  This shot comes with a long list of side effects as well including a general ache throughout your entire body.  Overall, treatment was a slight inconvenience to my schedule, I feel like crap in general but there is an end in sight, remember plan A above, I can do this, I am strong!

September 12, 2012, PET scan to check out what is going on.  BAM!!! Like a comet coming flying down into earth’s atmosphere and slamming into the ground.  It's not gone; there are 3 spots that are “worrisome for a focus of metastatic seeding”.  Although anyone that knows me, I try to focus on the positive which is that there is still nothing in my liver or lungs, the two most popular travel sites for metastatic colon cancer.  This is my happy place and this is where I am going to live.  In fact, I will ignore the other 3 spots on the scan because those do not make me happy!   Regardless of what I focus on, the bottom line is that plan A is scratched and we now must think of a plan B.

Plan B involves Dr. Alexander and his team down at the University of Maryland in Baltimore.  It involves 3 months of Folfiri followed by HIPEC surgery, 3 more months of FolFiri and finished off with a colostomy reversal.  I can do this plan, I am strong, I will get through this!

On November 9, 2012 I started experiencing severe pain in my abdomen on my left side.  My mother and I went to the emergency room at Ellis hospital and after a series of scans and tests I was told it was a kidney stone.  I was sent home with some pain medications and told to drink tons of water to flush it out.  When nothing happened a day or so later we decided a urologist would attempt to grab the stone with a claw like tool and pull it out from me, sounds fun right?  Well when they went up kidney stone.  This is when they changed their minds and decided it was tumor wrapped around my ureter and obstructing the flow.  I woke up with a nephrostomy bag attached to me.   This was one of my lowest points.  I am by no means someone that judges based on exterior features however I was now a 34 year old young woman that had to poop AND PEE in bags.  This was devastating to me and my one and only goal was to get rid of the pee bag.  That I did within a week which was a huge relief.  I had already gotten used to the colostomy; it's easy to maintain, easy to hide under clothing and quite frankly is easier at times, but to have a pee bag on top of that.....NO WAY!  In the end, I had a stent put in with intentions of repairing the ureter and bladder during surgery and remove the stent.

 February 28, 2013 turned out to be a very long day for my family and my medical team.  My surgery to remove the tumor and repair the ureter and bladder took over 8 hours.  In the end, they could not remove all of the tumor so metal pins were placed for anticipation of radiation treatment to follow.  I don't remember a whole lot with exception of I know I woke up in severe pain.  I was in and out of consciousness and I just remember being in so much pain that I didn't want to see my family, I just wanted them to knock me out again.  Because of the amount of pain killers I had been on previously, it was impossible for them to keep me comfortable.  I was placed in a dark room and had very little care for the next 24 hours.  I remember not wanting to live and praying to God to just end my pain.  I would later find out that the doctor had overstretched my nerve in my left hip which caused such a shooting, sharp pain to radiate down my entire left leg.  I couldn't walk; it was painful just to sit up.  This surgery was nothing like my first.  I still to this day do not think I have made a full recovery from that surgery.

I went on to do radiation down in Maryland upon Dr. Alexander’s recommendation that  there was no machines similar to the one they had there and that the best care would come from Dr. Ragine's team at the University.  Arrangements were made and I traveled back and forth 6 hours each way, every weekend to get done what needed to be done.  I was looking at the finish line again and so I was strong, I can do it!  I had treatment twice a day and to be honest, the first two weeks were great! I had my Dad there with me the first week and my step mother there with me the second.  I felt good, the radiation was working so I was getting more and more out of pain and there is a lot of beautiful site seeing to do in Baltimore.  With that said, by week 3 I was done!  I missed my family terribly and I was starting to feel the effects of the radiation.

It was right around this time that I started the process of weaning off of the Fentanyl patch.  I was told I need to do this slowly to limit the withdrawal symptoms.  I did what I thought was appropriate however a few weeks after radiation, in the middle of it all, I had a breakdown.  The withdrawal put me into such a state of depression that I actually had thoughts of ending my life. It was then that I sought additional help and got back on track.  They say that withdrawing from Fentanyl is similar to that of heroin and I can now understand why so many addicts stay addicted.  I can relate more to the people in those commercials you see on TV for people dealing with depression.  I don't want to get any further into this other than saying that our medical community really lacks in its general understanding of all of the issues that go along with the drugs that they prescribe to their patients and that can be deadly.

June 3, 2013- DOUBLE BAM!  We were again blindsided by the results of this scan.  We were all in shock when the scan came back reveling activity at the radiation site as well as four additional spots on my abdominal wall.  I don't think I need to go into how upset we were.  The team in Maryland all came into my room that day with heads bowed and their tail between their legs, they were just as astonished as we were.  They were also done with me.  They had nothing further to offer me and so with that we were off.  My father and I alone in the car for a 6 hour drive back home after hearing the news.  We had to make phone call after phone call repeating the bad news so that everyone was aware of what was going but each time splitting into our hearts like a sharp ax cutting wood.  Tears and sadness overwhelmed me...thoughts of my children growing up without their mother was too much to bear.  This is when I realized that I can't catch a break.  It seems along every turn there is something new to be dealt with.  I HATE CANCER!

Eventually the tears dried up and the heartache turned into sunshine once again, when I realized that it really is all in God’s hands and I have to sit back and enjoy the ride.  I have to live each day to the fullest and really enjoy everyone around me.  I need to appreciate what I have and not take any of it for granted.  It's so cliché but yet so true and I not only know it to be true but feel it in the deepest part of my soul.  It's hard to live each day by this motto but I have to try and get myself there whenever I falter.

I am now living on the edge a bit I suppose by enrolling myself into a clinical trial.  I truly believe that the answer in curing cancer lies in our own bodies.  I believe that immunotherapy will be the cure; it's just a matter of getting the right agent for the tumor.  You see, all colon cancer is not the same, not by any stretch of the imagination. It's almost misleading to segregate people into groups by what organ the tumor started in.   I think they will find that every tumor is different, just like everyone's genetic makeup is different.  Back to the clinical is trial NCT01053013 for those of you so inclined.  It involves small beads containing mouse cancer cells from a mouse kidney cancer line.  The cells in the beads produce substances that have been shown to slow or stop the growth of tumors in experimental animals, veterinary patients, and 23 humans with different types of cancers in a Phase I safety trial.  I am monitored and blood work is done every 15, 30, 60 and 90 days.  A scan will be done at 90 days in which we will determine if the treatment was effective and if I should proceed with the second round of mouse beads.

It comes down to this when making decisions in life:  The choices we make not only affect ourselves, but those around us as well.  I, at this point in my life, will NOT be doing any more harsh chemotherapy.  I truly believe in quality over quantity and since chemo is in no way curative, I choose other treatments, no matter how outside of the box they are.  Did you know that up to 80% of cancer patients are reported to have died from complications from treatment and side effects or related symptoms?  Not from cancer itself.  If this disease does take my life, it will be the disease that kills me, not the treatment!

P.S.  I try not to plan anymore :)

Michelle started what we will continue.  Raising awareness and helping those who do not have the fortune of a support network Michelle had.

No comments:

Post a Comment