April 2009

Allison’s Colondar Bio

Sponsored by Cut The Cheese

Allison Sandor was living the newlywed life of her dreams until she noticed blood in her stool. She went to the emergency room, but the doctor eased her concerns by telling her that it was probably diverticulitis. He drew a picture of her colon and told her not to worry.

Over a year later, Allison was back in the ER with more bleeding and severe abdominal pain. A check for hemorrhoids found nothing, but an X-ray showed retained stool. The ER doctor told her to eat more fiber and follow up with her regular doctor, which she did the following week. Her doctor told her, “Rectal bleeding is not normal,” and quickly ordered a colonoscopy. Allison was diagnosed with stage III colon cancer at 29.

She had a foot of her colon removed and completed chemotherapy, but her very first follow-up scans revealed a tumor in her lung. Allison had a lung resection and more chemotherapy but was told that after treatment she would only have a 50% chance of being fertile. The thought of having children was a bright ray of hope in a dark time, so before beginning chemotherapy, she and her husband had embryos frozen.

Allison and her husband have decided to try to conceive naturally before attempting in vitro fertilization. Although cancer happened to her, she believes it doesn’t define her and looks forward to passing on what she’s learned to her own children someday.

Allison’s story as told by Allison

Life was so good, so exciting, so much the way I always dreamed of it being.  I was 29 years old and living in Germany with my husband, Mark.  We had been married just over two years and were still very much in the newlywed phase of marriage.  He was gone a lot as a pilot in the Air Force.  But, I had really adjusted well to living overseas, making friends with the other wives, and just having the time of my life.  I was active volunteering with many organizations, substitute teaching at the elementary school on base, and even walking 3 miles a day.  I was full of life on the outside.  But, on the inside I was one very sick young lady.

It all started in April of 2002 when I noticed some blood in my stools.  I went to the ER on the military base one evening to get myself checked out.  I was worried and thought it didn’t seem normal.  After my visit to the ER and seeing a doctor there, he eased my concern by saying I probably had diverticulitis.  He drew me a nice little picture and explained it to me so I felt like it was nothing to worry about.

Life continued to be good for the next 15 months.  Looking back in retrospect, I don’t remember any specific symptoms, except that I had some clothes altered due to weight loss.  I continued to be active physically and with my many volunteer interests.  My husband and I continued to travel around Europe and life was great.

In February of 2003, my husband deployed in support of Operation Iraqi Freedom and returned in May of 2003.  We took a belated anniversary trip to Spain and life continued to seem good for the next 2 months.  Little did I know that I was about to begin my own battle on the home front with the fight of my life.

It was July 4th weekend of 2003 (which I’ll remind you was 15 months after my initial visit to the ER), and once again I found myself in the ER with my husband.  This time I was noticing blood in my stools along with having severe abdominal pain that had me doubled over.  I saw another doctor there that performed a “short scope” (which looked just inside the anus) that resulted in nothing being found. He also checked for hemorrhoids, which was negative and did an X-Ray of my abdomen.  He said the X-Ray showed I was a little “backed up” and he said I should try to “eat more fiber.”  He did recommend that I follow up with our flight doctor, though.

The following week I immediately called and booked an appointment with our flight doctor (military doctor we were assigned to see), who also happened to be a general surgeon.  When I met with the doctor, he said he wanted to perform a colonoscopy on me to check everything out.  He is the first one that said, “Rectal bleeding is not normal.”  No one had said anything to me previously.

The following week, I was prepping for my first colonoscopy at age 29.  I had always thought that test was performed for older people and that’s why I didn’t know to ask for it.  I was already learning about the prep and how disgusting it is.  That would only be the first of many disgusting things I would experience over the next 1 ½ years.

I had my colonoscopy performed and two biopsies were taken.  Neither looked malignant by sight and the doctor thought that maybe I had Crohn’s disease or irritable bowel syndrome.  We waited over a week on the results.  Finally, I decided to call the flight doctor to follow up.  I was put on hold and then they returned to the phone and said the doctor just received the results and I would need to come in to get them.  I knew this wasn’t good, so I called my husband at work to ask him to come home and pick me up to go get the results.  The doctor had already called my husband and asked him to come in.  Then, I knew this was something very serious.

My husband and I drove over to meet the flight doctor and two doctors ended up being in the room when we got there.  They looked very somber and I already knew what they were going to say.  And, yes the words came out, “You have cancer.”  It was the scariest moment of my life.  I literally felt the world around me come to a complete halt as I sat there as numb as could be.  I couldn’t cry or anything.  I couldn’t believe what I had just heard and neither could either of the doctors or my husband sitting next to me.

The next week I tried to stand strong as my husband and I spread the news to family and friends and began to figure out our next course of action.  We decided it was best for us to go home to Ohio for me to have a colon resection at Wright Patterson AFB.  We needed to be close to our family during this difficult time.  Ironically, the flight doctor who diagnosed me was also moving to Ohio for his next assignment.  He was able to arrange everything for my surgery and care at the hospital there.  And, most thankfully there was actually a colorectal surgeon currently assigned to Wright Patterson.   We left Germany one week after my diagnosis and were back in Ohio.  Two weeks after my diagnosis, I was in surgery for my colon resection (August 2003).

The cancer was in my sigmoid colon (descending colon before the rectum).  The surgeon ended up removing one foot of colon.  As I went through this surgery I was scared and relying heavily on my faith, family, and friends for support.  I made it through the surgery and was surprised at how different my abdomen felt inside after the surgery.  For several months, it felt so different as if they had literally moved everything around inside.  And, from my understanding things did get moved around during the surgery.  So, that is something I wish they had told me ahead of time so I would have been more prepared.

As I recovered in the hospital from my surgery, I wasn’t sure if I would need any additional treatment.  Then, I was informed that the cancer was found in 5 out of 29 lymph nodes that had been removed during the surgery.  This meant that I would have to have chemotherapy.  And, this was an additional scare and once again a blow to my efforts to keep a positive attitude during this difficult and scary time.  This also meant I had stage III colon cancer at age 29.  It was beyond anything I ever dreamed would happen to me as I had a perfect bill of health my whole life.

I was assigned to a military oncologist and learned I would be taking 5FU/Leucovorin for the next 6 months.  I was to take 4 rounds of it.  This meant I would take it once a week for 6 weeks with 2 weeks off between each round.  I decided at this point to get a port-o-cath put into my chest as an access for them to administer the chemotherapy.  This would prevent constant needle sticks in my arms and hands for blood draws and chemo.  I was unsure at first about my decision to get a port, but I would highly recommend it to anyone today that has to go through chemo.  It truly makes it so much easier and less painful.  However, I would not recommend getting your port put in (out-patient surgery) the same day you start chemotherapy, which is what I did.

I started my first chemotherapy and everything was so foreign to me.  I was still trying to comprehend how I ended up in the whole mess to begin with.  But, I survived the first chemo and ended up very sick from the chemo in addition to getting the port put in the same day.

I completed 4 weeks of chemotherapy, which put me at two more weeks until I got a break from the first round.  I continued to get sicker each week and my parents grew concerned as they were my primary caretakers.  (My husband and I had moved in with them as we he had to be reassigned to Wright Patterson in Ohio from our assignment in Germany so that I could continue to get the necessary medical care.  We would spend the next 3 years in Ohio with our family there to help.)  My husband, Mark, was away at a school for about 5 weeks while I started into the first 6 weeks of chemo.  Mark came home each weekend and saw me continuing to get more ill.  None of us were sure what to expect with chemo and we knew getting sick was part of it.  But, I was sick to the point of not being able to keep anything in my stomach (even with several different anti-nausea medications), I was wearing Depends as I couldn’t control my bowels, I had lost about 25 pounds from being sick and not being able to eat, and I was weak to the point where I could barely walk.  At 5’9” and down to about 100 pounds (from my normal weight of 125 pounds), I looked emaciated.

My mom continued to call the doctor’s office about my condition and nothing was done.  I remember my dad pushing me in a wheelchair into the oncology office a couple days before I was due to get my 5th chemo treatment.  I was so weak that I couldn’t even walk through the hospital at that point.  I got fluids, went home and survived the couple days until I was due to get my 5th chemo treatment.  My mom took me to chemo that day and after my treatment, getting sick, and much debating finally I was admitted to the hospital, which turned into a 23 day stay.

My husband arrived home two days later (after I was admitted to the hospital) after finishing his Air Force School and spent the next 21 days with me in the hospital.  I am so blessed to have married such a wonderful man.  He and my parents spent every day and Mark spent the nights as well.

I don’t remember much about the first 9 days of my hospital stay.  My attending doctor told my family that all he could do was “maintain me.”  The story is long and complicated, but the brief version is that I was continuing to deteriorate the first 9 days of my hospital stay.  Then, a new doctor was brought onto my case who ran many tests and determined that I needed to be admitted to ICU immediately.  My gall bladder had stopped functioning and he had a nuclear intervention surgeon insert a tube into my gall bladder to drain it.  There are many other things that occurred during the week that I was in the ICU including a blood clot in my jugular vein, my port in my chest stopped functioning and had to be removed, I wasn’t allowed to eat or drink and was given TPN (total protein nutrition by IV), having a dual lumen pick line inserted in my left arm (an IV that was inserted just above my elbow and ran to a major artery in my heart), and the list goes on.  Finally, in the ICU is when I started to make a turn for the better thanks to God intervening and sending us this amazing new doctor on my case.

The time spent in that hospital was the lowest point of my whole battle against cancer.  The 23 days in the hospital is where I touched the face of death, was carried through by the grace of God, supported unbelievably by my husband, parents, family, and friends, and was blessed to encounter many people I consider angels on earth.  I was truly given a second chance at life.

After leaving the hospital, I had a long road ahead of me.  I had to start eating again after being on TPN for 5 weeks, I had about 25 pounds to gain back, I had to gain my strength to walk again and do normal everyday activities, and I had lost all the hair on my entire body mainly due to malnutrition.  I felt like I had such a long way to go to become the “old” me again and I had to do it all little by little.  So, my new motto became, “step by step, day by day,” to improve.

After my bad experience, I decided to switch to civilian medical care (this is not a bash on military medical care as I still know some brilliant military doctors.  But, mentally I couldn’t go back to the same office and address doing chemo there again).  My new doctor I found in Cincinnati, OH was fantastic.  Right away, they diagnosed what had happened to me.  I have a DPD Enzyme deficiency which means that my body does not have the ability to break down the chemo drugs as quickly as most people break them down.  Therefore, as the original oncologist continued to give me the chemo drugs, the toxicity built too high in my body.  So, I was basically “overdosed.”

I resumed my chemo treatment with an adjusted dosage with my new doctor.  And, I was able to get through the rest of the chemo treatments and finish in February 2004.  My last day of chemo, I had one of the nurses pull my pick line from my left arm.  It was my sign of being free from chemo and my first step forward.

I began to see a light at the end of the tunnel as I had finished the chemo and my husband and I had just purchased our first home.  It was an exciting time and things were looking brighter.

In April of 2004, my parents threw me a 30th birthday party.  I have to say that was the best birthday of my life.  It was simple with family, special friends, and some amazing doctors who were there for us above and beyond the call of duty.  I will never forget how special that birthday celebration was.

In May of 2004, I went in for my first set of 3 month scans after having completed the chemo.  This is the first time they scanned my chest on the PET scan as well and that was when they found a small tumor on my lower left lung.

It was yet another blow in what had seemed to be going so well and my recovery from everything I had already endured.  I felt like it was a complete slap in the face, punch in the stomach, and it knocked me down flat.  As I heard the news from a dear family doctor friend, I began to sob and had to hand the phone to my mom.

I gathered what little courage and strength I had left and went in for a lung resection.  The tumor was only about the size of a dime, so this meant they only had to take a small section of my lower left lung, not a whole lobe.  I was thankful for that.  But, this also meant that now I had stage IV colon cancer (the most advanced stage) and I had just turned 30.

As I went in for the lung surgery, I literally finished reading Lance Armstrong’s book, “It’s Not About the Bike, My Journey Back to Life.”  It’s an excellent book if you haven’t read it already.  His candidness in talking about his fertility issues made me begin to ponder if I would continue to be fertile if I had to do chemo again.

When I came out from the lung surgery, I had my husband ask the doctor if I would have to do chemo again.  The doctor said, “Yes.  I would recommend doing an adjuvant therapy called the FOLFOX treatment”.  This would mean I would again take 5FU/Leucovorin in addition to a new drug called Oxaliplatin.  It would mean that I would get chemo in the oncology office and when I left there have another 48 hours of chemo infused through my port at home.

Because I was so upset by this news, I also had my husband also ask my oncologist if I would be fertile after taking this chemo regiment and he gave me a 50/50 chance.  Now, in addition to facing chemo for another 6 months, I was wondering about my husband and I being able to have a family some day if I was still around.  It was a dream of ours.

So, I began a whole new journey of trials and tribulations as my husband and I jointly decided to go through the initial process of in-vitro fertilization to have embryos frozen in the hopes of having biological children some day.

Basically, it went like this.  I had lung surgery, went through the first half of in-vitro, and through science and God’s grace, 14 frozen embryos were created.  I am mentioning this to bring this point up to other young people who dream of having children some day as well.  In the midst of battling cancer, fertility certainly is not the most important thing.  However, if you have the option to take the route of freezing embryos or banking sperm, it is certainly something that will give you that option of being able to have biological children in the future if that is what you want.

The in-vitro was not easy with the regimented schedule and my husband giving me the shots (he is much braver and has a much steadier hand than me).  And, after the eggs were retrieved I had Ovarian Hyper Stimulation Syndrome.  Typically, the ovaries are about the size of walnuts, but in my case they had swelled to the size of tennis balls.  From my understanding, this only happens to .5% of people.  I was very sick, had severe abdominal pain, and looked like I was about 7+ months pregnant!  Needless to say, we began joking that if there was even a slight chance of something being a side effect that I was bound to have it!  I was given pain medication, and anti-nausea drugs and the symptoms went away after a couple weeks.

Despite the Ovarian Hyper Stimulation Syndrome, the in-vitro was actually the high-point of all that I endured.  It was an exciting time for my husband and me to think about having children some day.  It was a bright ray of hope in a dark and scary time.

Immediately following the in-vitro process, I began my chemo treatment.  The regiment consisted of Oxaliplatin in the oncologist’s office and then followed up with 48 hours of 5FU/Leucovorin at home.  It was administered through a pump that I wore and it went through my port-o-cath I had inserted in the other side of my chest at the same time I had the lung surgery.

I can’t lie.  The FOLFOX treatment was rough.  It made me sick from the time I
was administered the drugs on Monday until Thursday evening when I would “come back to life” each week.  I felt as if sleep is what my body needed most during that time so that my body could rest and heal.  And, I think everyone should do whatever makes them feel best and most comfortable during their treatment as well.

The FOLFOX lasted 6 months and my dosage was adjusted due to my DPD Enzyme Deficiency so that my body would be able to tolerate the drugs.  I still had side effects that affected my blood counts and platelets.  Like many chemo patients, I had nausea, diarrhea, red blood cell shots (due to low counts), low white cell counts a couple times, low platelets, and even had one blood transfusion as my hemoglobin was at 7.  In addition, I had really bad neuropathy, which is sensitivity to cold.  I had gloves I could wear to get things out of the freezer if need be.  And, I learned to drink beverages at room temperature and without ice.  Most unfortunately, I gave up one of my favorite foods for awhile… ice cream.

I made it through each treatment again with God giving me the strength to endure in addition to the love and support of my family (especially Mark, my parents, and some dear family friends), friends, and my excellent oncologist and his nursing staff.

I finished chemo in February of 2005 and I was so happy and thankful to still be alive after all that I had endured.  There I stood in the light at the end of the tunnel.  It all seemed so surreal what my family and I had been through and I still had many more years of testing and follow-ups to watch me closely.

Since finishing treatment, I am so thankful to report that my scans have been clear.  Each time it is still so nerve-racking to face the reality of checking to make sure I’m still healthy.  It keeps me humble and grounded as I never forget how precious and fragile life can be.

It is so surreal still to think that any of this ever happened.  Yes, cancer is a life-changing experience.  It has changed how I feel, how I think, and the physical appearance of my body with scars.  However, I like to say that, “Cancer is something that happened to me, but it does not define who I am.”

I can still say that I wish I had never had cancer.  Mainly, I wish that my husband and parents didn’t have to suffer through it with me as it was very difficult for them to watch me battle the disease.  I wish no one had cancer.  I still think it’s a scary disease.  And, that’s why I want to speak out about it to educate people and bring about awareness so that other people can avoid going through what I endured.  Early detection is so critical and since I was not diagnosed early I had to battle that much harder to fight the disease.

I am so grateful to God for giving me a second chance at life.  I am so grateful for a few brilliant doctors and compassionate nurses/med techs, for other amazing patients I have met along the journey, for my loving husband, my parents, my family, and dear friends.  I walked that dark path, but I still know I didn’t walk it alone.  For all the other brave individuals who have walked that dark path or are walking it now, you are an inspiration to me… keep fighting, keep laughing, keep living life to the fullest, and keep the faith.  God Bless!