It was on July 22, 2004, my 43rd birthday, that I heard those words, you have Stage IV colon cancer, you have 6 months to live, but you could die at any minute. I was so angry, that I wanted to live 6 months and a day, just to prove that doctor wrong.... I never could have realized at that time, that I set my sights way too low....
For those newbies who haven’t heard it, here it is... copy and pasted from years past, because I'm too lazy to retype it all. But, I do have a great update at the end!!!
To tell you a little about myself, I had moved to a new state in May of 2003 for a job. I previously had a full time job, was in the reserves and freelanced. So I didn’t have many opportunities for philanthropic work. When I took this, job, I only had one. After living here a year, I felt confident in my position, but a little bored. I prayed to the lord that whatever he needed me to do; I had time to do it. I would let him pick my path. I would let him pick my work for charity.
At the same time, I needed to renew my prescription for my allergies. So I stopped into a walk in clinic for a prescription for them. The Dr. stated it was probably allergies, but suggested I should get a colonoscopy to rule out IBS or Chron’s disease, but not to worry; it wasn’t like I had cancer or anything. So I did some research on IBS and Chron’s and made an appointment at a different facility with another doctor and he tried to talk me out of it. He said I was too young, I had no symptoms, my insurance wouldn’t pay for it and he informed me that walk-in Dr.’s aren’t the best physicians. However, I had done my prep work and a friend and I had taken the day off of work. So, I went ahead with the procedure. He asked me to come back on Monday for the results.
When I saw him, he stated I was lucky that I choose to have a colonoscopy. He had found something. He went through the stages of cancer. He said they would know more, once my biopsy was back. At the time, only 5% of people survive Stage IV cancer and, on average, individuals usually only lived for 18 months after diagnoses. Feeling as good as I did, I thought, even if it was cancer, it obviously was in the early stages, since I didn’t have any symptoms. I purchased a lot of books and scoured the internet and felt assured that I was fine, since I didn’t have the symptoms.
People say that they will never forget the day that they found out that they had cancer. For me, it will always be easy, it was my 43rd birthday. I then went to yet another facility to meet a colorectal surgeon. He confirmed that I had Stage IV cancer. He told me that I had six months to live, but that I could die at any minute. He seemed nice at first, until I told him that I would be getting a second opinion. He glared at me, and I knew that I would never step foot in his office again. He became angry with me and informed me that he would not have time to talk to me about the surgery, but he did let me know how dire my situation was. I needed to plan the surgery ASAP. That even with treatment I would live for 18 months tops, but that I could die at any moment. He proceeded to let me know the excruciating pain that I would be in when my colon burst and my gastric juices would flow throughout my body. That I should not fly on a plane, that I should not lift anything, that I should not eat anything, because these could make my colon rupture.
I held my ground and stated I wanted my medical records so that I could take them with me. Well, he didn’t have them, so I had to retrace my steps, going back to the different medical facilities to pick them up in a city I barely knew. None of the places that had my records would release them without me personally picking them up.
I remembered the words of that doctor, the excruciating pain I would be in. I thought, how would I get to a hospital. Perhaps suicide would be better than the pain. I thought about running right into a concrete median. But thought, what if I killed someone else, and that doctor made a mistake. How could I live with myself? I thought about driving off a bridge, but what if I broke my legs, and it turned out not to be cancer. I thought about OD’ing on drugs, but didn’t know what prescription drugs would do it. Then, out of nowhere, a car tried to pass me on the shoulder and hit me. Now, not only did my odds seem hopeless, I was also transportationless and over 50 miles from home, with a cell phone that was dying, with all my friends calling me up and wishing me a happy birthday. Even I knew that telling people I was about to die, could wait a day, a few weeks, even until after my death.
You would think I would have known better. Cumulatively, I’ve had some of the worst birthdays. It started with my folks forgetting my birthday when I was 7, going to court to have a family member who had Alzheimer’s, put against her will in an assisted living facility, and on, and on, and on… Whenever tragedies happen in my life, I try and figure out what life lesson am I supposed to learn. I thought by seeing a doctor on my birthday, certainly, I no longer expected anything good to happen on my birthday. Okay, I did buy a lottery ticket; after all, wouldn’t that make a great headline. Woman dying of cancer wins $22 million dollars, has six months to spend it. So “WHAT LESSON WAS I SUPPOSED TO LEARN????”
And then I knew. I knew, because once I admitted it, it was the first time I started to cry. I was always a giver and was too independent, too selfish, to ask for help. Even at that, my independence made it difficult for me to ask for it. I thought about my next step and who I would call. After all, I barely knew my coworkers for 1 year. I picked up my phone and called a co-worker to pick me up. I called someone who I thought could keep a secret. I let them know the direness of my situation because I still needed to pick up my records and I had time to do it, but I knew he was a bit of a lollygagger. I asked him to not tell anyone.
I get a call back that he couldn’t pick me up right away, however, a co-worker’s brother lived right by where I was. He was a stay at home dad. He would pick me up and get my records. (What??? Now another co-worker knows??? AARRRGGGHHHH). My lesson would be hard learned. Well, his brother had a hard time finding me, and none of my records would be picked up because it was after 5 by the time we met each other. I had set up appts at the U of MN, the Mayo, MD Anderson etc, etc, etc…. My birthday was on a Thursday, the U of MN made room for me on Monday. Mayo on Wednesday, MD Anderson on Friday, etc. etc. As I said, I went to the bookstore on my birthday. And every year, the week of my birthday, US News publishes its list of best hospitals. You can find it here. http://health.usnews.com/best-hospitals/rankings/cancer
My co-worker met me, and he drove 45 miles an hour on a 65 mile an hour highway to get me home. (I wanted to strangle him, but it’s true what they say, it’s far harder on the caregivers, than it is on the patient. Because all I wanted to do was go home. I was having a horrible birthday, and the sooner I went to sleep, the sooner my birthday would be over. Tomorrow would be a better day. Tomorrow had to be a better day.) On the way home, he gave me print outs that our administrative assistant printed out of airline flights to Minnesota. Great, now she knows too.
The first thing I did on Friday was read my horoscope. It said as long as I saw a doctor early in the month, everything would be okay. I went to the walk in clinic on July 1st. Yea!!! I was elated. This was the first bit of good news I heard. It gave me the motivation to continue. I made my airline appt, called friends to meet take me to the airport, meet me at the airport, etc, etc, etc. I now knew the importance of not seeing doctors alone. I emptied out my fridge, gave food to my neighbors, bought a lot of cat food to feed the stray cats I fed. Then I started to pack two suitcases with all of my worldly belongings. I packed my bible, my prayer bible, my rosary, and several books about colon cancer. I kept looking and laughing, as I had no clothes in the bags. But then I thought, I’m going to Minnesota, the home of the Mall. Clothes would be easy to find. But I wound up taking every thing that was important to me, that would be irreplaceable. I now know what I would take if I ever needed to leave my home in an emergency.
I looked around my place, thinking I may never come back here again. I took photographs in my brain of what I had and what I have accomplished. The day someone was there to pick me up to take me to the airport, there was a torrential rainstorm. But I had a nice friend, who picked me up and she carried my suitcases to her vehicle, and to the plane. After all, if I picked them up, I could die. She never complained once.
Going to the U of MN, they too couldn’t get my records. I redid them all. Turned out to be a great thing, because they had newer CT scans, and their pictures looked a lot better and were electronic. All of my doctors and tests were within walking distance. No more getting lost and trying to find my way around. After my results came in, I met with my oncologist, Dr. Edward Greeno. All of the other doctors spoke highly of him, and let me know that he would be the mastermind behind my whole journey. Not only did he give me hope, he gave me options. He let me feel that I could have some control throughout this whole process.
One of the things that we talked about was a Stage II clinical trial. I remembered trials from a Statistics course I took in college. I understood the years of research it would take before a trial could be offered to patients. I also understood the different types of studies that needed to take place before drugs could be cleared through the FDA.
Katie Couric’s husband’s doctor had just published a book right before I was diagnosed. Talk about lucky me. In it, he talked about the use of an HAI pump. This interested me. Well, the clinical trial that was being offered to me, involved the HAI pump. Talk about lucky fate.
I’ve always been a supporter for the advancement of science and I knew I would never have a problem signing up for a Stage III clinical trial. However, Stage I and II trials frightened me. I was sure that only the sickest of the sick would sign up for those. Then I realized, I was the sickest of the sick. Dr. Greeno explained everything to me in great detail, gave me the forms from the trial to read. He gave me a lot of confidence in helping me understand what was involved in the trial. I appreciated all of the research that had taken place before I even started the trial and all of the safety issues that would be put in place to ensure that no harm would be done to me.
I’ve always been concerned that I would become addicted to drugs. I interrogated all of the medical personnel whenever I was given a new drug. One time, after my liver surgery, they wanted to give me a sleeping pill, because I was awake almost all night, and I needed a good nights rest for all the tests I would need the next day. The conversation was about 10 to 20 minutes long, until someone said the common name of benydrl. Heck, I take benydrl for my allergies.
A few weeks after I was released from the hospital from my liver surgery, I was still feeling a bit of pain in my abdomen. I was weaning myself (not doctor ordered) from my pain meds. I had an appt on Monday and would get a refill then. Dr. Greeno had my abdomen ultrasounded just in case. When a friend picked up my prescription at Walgreen’s, I saw, for the very first time in my life, a white squirrel. I had never seen that before. I took that as a sign that everything would be okay. It was a good thing too. My friend and I went shopping and got some groceries. We watched some TV and then I checked my voice mail at 11 PM. In ever increasing urgency were 7 voice mails. The first 4 were from my nurse, the last 3 were from my doc. I needed to return to the hospital immediately.
Upon entering, I was told to put on a gown and lay in bed. I wanted to know why first, we had to wait for the doctor. He ran in, wondering why it took me so long to get there. I am fidgety and talk with my hands and I told him my adventure. He kept telling me to stop moving. I could tell he was stressed. I thought perhaps because I woke him from bed. As I kept moving he kept telling me to stop and to lie in bed. He finally blurted out “You have a blood clot by your hepatic artery!” Okay, I’ve heard blood clots are bad. But my appt was at 2 PM. I went shopping, climbed three flights of stairs up, and then down again. I didn’t understand. And then he yelled. “Don’t you get it, if you don’t stop moving, you are going to die!” I stopped, and he walked out of the room, I think to regain his composure. I asked my friend and the nurse to leave so I could change. But I would be moving…. The doctor talked to my friend outside, who was in shock. This was the first time he heard that I could die imminently. … I had never seen him so upset. But once I was in bed, I asked if I could move my arms and legs. Was it just my torso that I couldn’t move? He frustratedly said “Arm, yes. Legs, barely” At that, since I am quite the walker, they supposedly lost my clothes until the day I was able to check out. That wasn’t the first time it happened to me, but it cracked me up that they thought that I wouldn’t leave the hospital in my stylish gown. Since I hadn’t packed at all, my friend bought some books for me to read. It’s nice to have great friends. It’s nice to ask for help.
At this time, The Terry Shiavo case was all over the news and I started wondering about my own fate. Would the rest of my life be filled with endless Dr.’s appointments, until I was finally sent home one last time to die? I was becoming annoyed because I had not started chemo, and I felt my journey’s end slipping further away. Even more so, because it’s hard for me to sit still, no less lie still. All that changed when Dr. Greeno visited me in the hospital and assured me that the worst was almost over. I also remembered that I saw that white squirrel. It gave me hope.
What was even scarier, once I started chemo, I started losing my personality. My handwriting got very small and neat. I started talking slower, I started typing slower, I started walking slower, I barely slept as I constantly wanted to walk. This happened over the course of 2 weeks. I didn't want to say anything.... Afterall, who complains that their handwriting is now neat and small. I mean, they are going to send me to the looney bin. I have similar handwriting as my father, and when he was ill, his handwriting looked smaller, but not as small as mine, and jittery, as mine also was. I was concerned that I would be put away forever... When I couldn't sit still for my appt with Dr. Greeno, he sent me to see a neurologist. They did a mri scan of my brain. The residents were VERY impressed on my sinuses and complimented me on them. I almost started to laugh. But I asked, does this have anything to do with what's wrong with me. They said they really didn't know how to read the report, but they didn't see anything.
I saw a neurologist, who wasn't sure what was wrong with me, but said he would send my info the the head neurologist. He informed me that this guy is the same guy who ultimately decided Terry Shiavo's case. I became really nervous. I felt as though my fate was about to be handed to me. That there was no hope left... Thank goodness he called back within 5 minutes..... Apparently, I'm one of the very few people in the world, that when you take raglan, it gives you medically induced parkinson's. The neurologist showed me the symptoms from a poster he had on his wall. Sure enough, your handwriting becomes very small and neat, you talk slower, you walk slower... All the symptoms were there. Now, whenever I go to a doctors office, I read all the literature. You never know if you might be able to help your doctor diagnose you.
Once, while I was getting chemo, I was wondering if signing up for a clinical trial was such a good idea. And then, in an instant, came a crawl on CNN. Patients who sign up for clinical trials do better than patients who don’t. What???? Surely I’m delusional. Did I see that right??? Luckily, my chemo took 1.5 hours. So I had time to sit and watch it crawl by again. Sure enough, there it was. I never doubted my treatment again. I never doubted that God sends you signs when you need them most. Luckily, I’ve never needed a sign since.
My oncologist really helped me through it. He never made me feel that he didn’t have time for me. I always felt that I was his priority. This may not seem that amazing a feat, unless you understand that once my chemo treatments came to an end, I realized that I would not see him as often. My appointment with Dr. Greeno was at 4 PM, and I asked over 100 questions. I figured I would just keep asking until he shooed me away like so many other doctors. Okay, partway through he did mention, "it looks like you have a lot of questions there" I said "Yes I do, so I hope you're comfortable" and kept asking questions. But Dr. Greeno, stayed after 5 and never once looked at his watch or seemed annoyed. I knew he would help calm my fears of my cancer returning, because I now knew the reason so many people are scared of cancer. You don’t even know you have it.
What makes Dr. Greeno a great doctor is, he explained everything to me in a manner in which I could understand and was not the least bit concerned that I was tape recording every word he said. Not only did he make me more knowledgeable, I have been able to pass on this knowledge to other patients who are too timid to talk to their doctors. Several of them thought they were incurable, and I convinced them to get another opinion. Several of them have now been told they can be cured.
Due to Dr. Greeno’s patience with me, as I gained knowledge about my disease, I have also used this information to enlightened friends of mine who are both State and US Senators. If not for Dr. Greeno’s tireless efforts of answering my questions and keeping me informed, I wouldn’t have the information for them to help others.
People will ask if you’ve changed from having cancer, I say not really. I’ve always been a very positive person. But I have learned some valuable lessons.
1, I’m excited because I’ve already had the worst day of my life. I can’t imagine any day being worse than that. And, it was the worst birthday of my life to boot... Some people will say, what about the day you die. Heck, I’ll be dead.
2. When you first move to a city, find great hospitals and doctors first, not find where the best stores are.
3. My life has gotten easier, now that I have learned to ask people for help. It makes them feel valued, and I’m able to get a lot more things accomplished in my life. I used to think I needed to learn everything, now I say let the experts who know excel, do excel for me. And if I google things I need in an excel program, chances are, there is an excel program out there for me. I found a checkbook program, medical bill tracker and one for taxes. That is really all I need.
4. The most important thing I’ve learned is, God has better things to do, than to find me a hobby.
Thank you for letting me share my story with you. I share it every year, because when I was diagnosed, I was looking for any Stage IV's who had survived. Message boards were not what they are today, and I couldn’t find anyone. Now, thanks to this message board, I have found many.
My update... I had my 5 year colonoscopy in April and it was clean as a whistle. I went back for my physical in June, and my blood work is great, albeit one liver enzyme is slightly elevated. AND....drum roll puhleasseee.... I had my first CT scan in 6 years.... All Clear!!!
Thank you all for sharing your stories, for helping the newly diagnosed find their way through this maze. And I hope you'll share a smile with me, to celebrate my birthday/cancerversary. I no longer dread getting old, I am thrilled that I am alive!!! I am soo blessed to have so many friends who are willing to help me... and celebrate my birthday with me!!! Thanks for letting me share!!!