I'm so sorry it's been so long since I've posted! Life has been very busy, I've been working full time and going to school full time.
I was teaching in a college nursing program, and our school just closed, so now I am only going to school and not working! I graduate with an advanced practice nursing degree this August, so will just go to school until then. I will have a Masters degree in nursing and will be an oncology clinical nurse specialist. A CNS of four advanced practice nursing degrees.
I taught oncology in my college to my student nurses. They knew I was a survivor, I shared my story. Aside from diagnosis and treatment, we talked about the personal aspects a diagnosis has. I shared with them the things I felt they should NEVER say to cancer patients:
1. "You need to stay positive!!!" I had people who felt I would not survive if I didn't stay positive. That staying positive was vital to a cure. This is not true, and it's unrealistic. Research has not shown positive thinking to affect cancer survival. Jimmie Holland, a renowned scientist and psychiatrist who has worked for years with cancer patients (and who was still working full time at 80!) wrote a book, "The Human Side of Cancer: Living with Hope, Coping with Uncertainty" , a book I read shortly after I was diagnosed. BTW, I got to meet her and have lunch with her at a cancer conference!!!! She founded the field and science of psycho-oncology.
The second chapter in her book was "The Tyranny of Positive Thinking". Expecting a patient to think positive makes the patient feel their attitude is responsible for their survival, it places a burden on them. I told my students, when faced with losing everyone you love and involuntarily abandoning your children, losing everything you own and losing your future, it is normal to feel the negative emotions of anger, fear and sadness. Many cancer patients become depressed....that is normal. The best thing you can do is listen and support them through their negative emotions. For many people I felt I had to fake a positive attitude and that was very difficult. The person who was the most support to me at the time was the person who let me sob as I talked about possibly dying and leaving my children motherless.
2. "Now you understand how to live one day at a time and to stop and smell the roses! How wonderful". Okay, that means you live contemplating dying and losing everything tomorrow. I did live that way for awhile and it was a kind of hell. I couldn't make a 6 month dentist appointment, I couldn't say the words "next year", I couldn't plan a vacation. I couldn't contemplate going back to school. I couldn't imagine seeing my kids graduate from high school, driving a car, their first boyfriends. I lived one day at a time. I lived CT scan to CT scan. I could only plan my life in 3-6 month intervals between scans. It is a hopeless way to live. We all live for dreams of tomorrow, even if we are enjoying today. Hope involves tomorrow.
If you work with or communicate with cancer patients, be careful what you say! Try to be empathetic, put yourself in their shoes!
My husband, Joe, was diagnosed with a very rare form of cancer at the end of 2012. Appendix Cancer affects 1 in a million people. And, the type of cell Joe had was even rarer. To date, I have yet to talk to anyone or find a case study just like his. When we first learned of Joe’s diagnosis, I didn’t handle it well. Can you blame me? He had just turned 36. The business we had started was really taking off. Like all marriages, we had our ups and downs over the years and at that time we were in a good place. Our kids were flourishing. We were happy. Life was pretty good. Then…..WHAM. After Joe was diagnosed, I went to the bad place and immediately assumed we were going to lose him. At the time our little boys were 8 and 5 and I saw a future where I was raising them alone. It was the most all consuming fear I had ever experienced.
For better or worse, I made it my mission in life to find out everything I could about the stupid appendix, this stupid cancer and what I could do to make it go away. Joe was staged at IIIB (meaning it had spread to his lymph nodes), borderline stage IV. Everyone I knew told me not to research it, to stay away from the studies and the books. It would only drag us down. But, I couldn’t. I felt like if I knew enough, if I had all the facts we could better face the monster. I learned a LOT about Appendix Cancer. Can’t say it was something I wanted to be an expert on, I would rather take up paddle boarding or biking (this is how I envision myself, so just go with it). When someone you love is battling a rare disease, it is imperative (I can’t stress this enough–imperative) you seek out the guidance of a specialist in that area. No matter how far you have to travel. In our case, there are only a handful of appendix cancer specialists in the world. If I hadn’t done my research, if I hadn’t advocated for my husband and found a specialist, our story would have ended a lot differently.
I won’t go into too many details of the cancer battle itself. It was long. It was hard. There were many days I thought Joe was going to die. He got scary skinny. He looked like he was dying. Our boys spent far too much time at their Grandparents house—-I didn’t want them to see the horror that chemotherapy truly is. It drug on and on and on. Fortunately, for us, there was an end. I know families that battle cancer for years and years. We are blessed that we got to see a light at the end of the tunnel. One huge surgery (they call is MOAS, Mother Of All Surgeries), 9 rounds of chemotherapy and months and months of living nothing but cancer later, we are starting to get back on our feet.
Joe is doing pretty well. He has physical limitations due to the surgery. They removed 6 inches of his colon, his gall bladder, and omentum and bathed his abdomen in a chemotherapy wash. He also has pretty extreme nerve damage in his feet from the chemo. We have a lot of anxiety when it is time to get a CT scan. In fact, he had scans last week and met with his surgical oncologist today. There is a spot of concern and to be on the safe side his doctor wants to run some additional scans. Honestly, I’m pretty scared. I’m trying to stay calm, but I’m pretty scared. I don’t want to show that to Joe or our kids, but I can feel the terror rising in my belly. I’m pretty sure we couldn’t do this again. A person has their pain threshold, I kinda feel like we’ve met ours! This stupid cancer, like all stupid cancers, can return (I always tell my boys not to use the word stupid, in this case I want to use another word, but will refrain). And that’s terrifying. We will live with that fear for the rest of our lives.
Life after cancer is way harder than I ever dreamed. You don’t go back to the way things were. Sure, those around you figure everything is good–normal (whatever that is). You can pretend like you are a better person for having gone though it, but the reality is it is very, very hard. There is guilt around every corner. Questions at every bend. Wondering if our kids are going to be super screwed up as a result of the things they’ve seen and gone through at way too young an age. I catch myself feeling sad, angry and emotional and it’s kind of embarrassing—after all, my husband is a survivor. I’ve even felt resentment at Joe for putting us through this. Terrible, right? Joe is different too. Really different. I have a hard time figuring out what is going on in his head. I know he is grateful to be alive, but I see the internal struggle he has to try to figure out what is next for him.
Getting back to why I am boring the world (or the two people that read this) with details of our lives. Should our feelings, our private goings on, my husband’s health, be made into a public forum? I always believed that it was a private matter and should be kept so. When Joe was battling cancer, I started a little private Facebook group to keep family and close friends informed on what was going on with us. I believe it helped me, and in turn my family, get through our darkest days. I even had people tell me it helped them. After all, we all know someone affected by a life threatening disease. Although Joe wasn’t actively writing the posts, he always read them and the comments lifted him and gave him faith.
I have had many people ask me when I am going to write a book about this journey. I know they were probably joking, but it did get me to thinking. I guess the thing that disappoints me the most about myself is that as we were going through this battle I vowed I would make a difference for someone, somewhere battling a rare cancer. Truth is, I haven’t really done anything. It’s a huge task and I really just wanted to get back to living our lives. The emotional challenges we have faced led me to seek more information on the aftermath of a major life trauma. There aren’t a lot of books on the matter. No manual or guidebook. I couldn’t find a blog or a support group on this specific issue. Then Robin Williams committed suicide. I lost two Grandparents to suicide and I know firsthand the stigma that surrounds it. I know it’s a different subject altogether, but really it’s about feeling like you have a lifeline SOMEWHERE, no matter what the challenge is. It seems like there is a lot of discussion and openness about the struggle itself, be it cancer, death of a loved one, a divorce or really any major life trauma, but the support and open discussion seems to fall off once you are “through it.”
I digress (and I promise, my future posts won’t be this windy)…….
I can’t tell our story from a survivor’s point of view, but I do know what it’s like to be a caretaker (this role is no picnic either), a mother and a wife while facing less than ideal life circumstances. Words are powerful, hopefully I can use mine to make a difference.
Please share with me your experience or story! I want to hear from you.