My cancer journey (Scott)

My Cancer journey

Family history

To say I never thought I would have cancer would be an outright lie. My grandfather (dad’s side) died of bowel cancer at age 59 and my father died of bowel cancer at just age 54. Due to this history, my siblings and I were highly encouraged to undergo frequent testing to ensure that any cancer cells or pre cancer issues are caught early. So ya, while not an ever present thought, I certainly did think about it from time to time, but I never anticipated contracting a cancer at just 40 years old.

Could I really have cancer?

My journey started in the spring of 2011, when I was experiencing legitimate back issues. By legitimate, I mean separate from the cancer, I have ongoing back issues. When complaining to my family doctor of numbness and tingling feelings into my groin area and going down my legs, the doctor did notice oversized lymph nodes in my groin area. This led to a series of ultrasounds over several months which found them to be growing each time. My fears heightened when I would investigate oversized lymph nodes on the internet and see my cancer options. In November 2011 I had an appointment with a doctor who confirmed my fears. He said based on his experience that it was likely cancer, but that he would order a biopsy. More waiting, grrrrr. The waiting just simply sucks. I had the biopsy on a Thursday and by the following Monday I received the fateful phone call. We had urged the doctor to get us quick answers and had prayed for quick results. Well quick they were. Now I have been involved in difficult phone calls before with my father and my wife’s health, and with my nephew’s sudden passing, but when it’s about you and your own mortality it’s a different kind of hard. I knew as soon as my cell phone rang that it was him and I knew this wasn’t likely good. In these kinds of things, the shorter the wait, the worse the result. I knew that from the many tests my wife had endured. He started off by telling me there is good news and bad news. The bad news is, medically speaking it’s non-curable Non-Hodgkin’s B Cell Follicular Lymphoma, and the good news is that it’s slow growing. My mind raced, hands were sweating, and I was shaking. I thanked him for his quick call, packed up my things and left the office, mumbling to my boss on the way out that I had to tell my wife first. He had known that I was undergoing testing so I am sure he knew by my reaction that this likely wasn’t good.

Telling people my news

As I mentioned earlier, I do have some experience with hard phone calls, but telling people sad news is never a nice thing.  It’s awkward because the recipient is typically caught off guard and doesn’t know what to say and the person with the news, in this case me, was kind of numb. People tried in their own way to offer encouragement, but much of it rang hollow. While they were sincere and meant well it was easy to feel very alone and hurt. Mostly it felt like healthy people telling me how I should feel, passing verses on to me that would be a quick miracle comfort to my hurting soul.

I started by telling my wife. She was not at home, so it was an awkward call and she was in the midst of taking the kids to activities. At this point the kids did not know anything. I then drove to my mom’s, told her, did the same to my sister and phoned my brothers. Prayer chain emails were sent out, people were shocked. Additionally I did not look sick and in fact even during chemo have looked quite well, I feel that due to this, people have not always seemed too sympathetic to my plight. It’s very hard for any of us to share in someone’s inner suffering.

How was I doing?

While there really was an outpouring of support, it was the quiet and alone times when I really struggled, when the issues I had been experiencing with anxiety now for several years gripped me with a chokehold and when Satan waved my uncertain future in my face as if to taunt me. Life had not been all roses for my wife and I, although we have much to be thankful for, we had found life challenging and I was emotionally spent, done, tired. This was just another blow, a big one, when I already felt like a tired boxer who could not get his hands up to defend his opponent’s onslaught. Outwardly I looked well; I could get by with my sense of humor and likely fooled many including myself. Inwardly I was in turmoil, lost, lonely and not sure how to proceed. I felt like I was unraveling. That’s the thing with feelings, we all have them, but they are so personal and unique to us and so easily concealed that when we do unravel we often shock even those closest to us. They are left to wonder , where did that temper tantrum come from, where did all that emotion come from, while you alone know that the sea inside has been raging for some time. I am a stuffer by nature and I couldn’t stuff or supress my feelings anymore. Spiritually speaking I did not feel angry. I am a firm believer that God does not owe us anything. Looking back I can see how he has used this to increase my faith and dependence on him. I would say that the overwhelming feeling was of inadequacy, “I can’t carry this burden Lord”, and I am already spent.

The treatment process

I found out I had cancer on a Monday and was in to see the specialist just 2 days later. She reviewed with me my diagnosis and that they typically do not treat this cancer until it is uncomfortable and causing issues. I didn’t have any symptoms such as severe night sweats other than that the nodes were quite oversized. At that point she advised us not to tell our children and that the next step would be to have CT scan to see what stage the cancer was at and what treatment they would suggest. I had the CT scan and met with the specialist again. I had stage 3 of 4 non-Hodgkin’s B cell follicular lymphoma. The doctor than told us that we could still wait to have treatment or she could schedule me in. She advised that I would likely have to undergo chemo within a year. The treatment plan would consist of 6 treatments, one every 3 weeks, a CT scan to review the results and then a 2 year maintenance program consisting of chemo and monitoring every 3 months. We had much to think about and due to the pending treatment and side effects; she counselled that we should advise the kids. Taking all of this in was hard, I felt numb and on information overload. I was so grateful for my wife who supported me and was another set of ears to take all of this in.

Telling the kids I have cancer

 Our kids are not strangers to sickness. They have been through a lot. In fact when I consider my joyous childhood compared to all that they have endured, it is scary. They have done very well though, but still we wanted to be very sensitive as to how we communicated this to them. They already had great anxiety over losing their mom and rightly so after her near death experiences. People were praying for us about this and we were very pleasantly surprised at how well they handled it. We had already told them that I had a blood issue, which was true, that’s what the disease was, but the C word is a scary one that even kids have a perception of. They hear of friend’s parents or grandparents having it and dying from it, and a picture of hopelessness is painted for them. We tried to encourage them with what we had been told, that I could live with this, but it would take time for their little minds to process this.

Chemo, what a bear

We opted to proceed with the chemo right away. Like so many things in life, chemo is really something you have to experience to respect it properly. It is like a savage beast that can completely overwhelm you. It feels like being hit by a truck. Any of those saying may well be fitting. A doctor explained it this way, “chemo is a poison put into your system to kill off things, don’t think for a second that this strong chemical will not affect your mind too”. While I did not lose my hair or throw up, I found out after the first treatment on Dec 23/11 that I was in for a wild ride. It’s a huge wave that hits you, affecting every aspect of your life from your senses to your clarity of mind, memory, how your stomach feels and how you sleep. I felt like I was riding a horse, but teetering or like a person walking crooked in a stupor with life happening around them. For many reasons I chose to work through this. The blessing in this was it gave me something else to think about. The challenge was it just further drained me emotionally. I mentioned that I was spent going into the process, well now I was spent and change. I had no capacity to deal with anything and by May 2012 needed a break. In hindsight, I should have taken that whole initial chemo period off, but lesson learned and onward and upward we go. Complicating things was an antidepressant that I was on. Between this and the chemo, I was not of clear mind.  During the initial treatments, I often felt that I had to think through an overwhelming fog, something that persisted on and off and with professional help gradually disappeared by early 2013.

The impact on our marriage
My beautiful and caring wife was and is a great support to me. This period in our marriage was a real challenge because of all the change and what we had already experienced together. We had accumulated our emotional bumps and bruises. As I have said, I was spent going into the cancer experience, I believe that my wife was also near her limits. Over the previous 7 years while my wife experienced health issues, I had to be the strong one, now the roles were reversing. It was not an easy transition for either of us. She could no longer lean on me the way she had and I became too focused on myself and my battle, giving little attention to her needs. We made it through by God’s grace and have learned much about ourselves and each other, but it was a challenging time.

Have I felt supported?

I know that many people care and that many have tried to help in their own way. Support is a challenging thing, because the person needing it has an expectation that is based on the pain only they feel and the person giving it is giving it on perception only. The receiver may also be in an oversensitive state and not always receive the message as intended. We live in an information overloaded society where many of us have all of the answers for somebody else, but few of us including me take the time to walk alongside someone and help carry their burden as the bible suggests that we should. In our culture many of us are not great at putting ourselves in someone elses shoes. This, all combined with the fact that many off my friends have not had similar experiences, has made it challenging at times to feel understood, although I sincerely know that people do care. For example if you have been fired, had a miscarriage, financial difficulty, a divorce, etc., you will likely, but not always feel better understood by someone who has had similar experiences. So too it is with me, while I feel the care and love, I haven’t always felt understood. To emphasize this point, I don’t know anyone in my friend and acquaintance circles with cancer unless I count much older people and I know a lot of people. Understanding my current condition with cancer, my past experiences all combined with who I am and the stage I am at in life is a tall order and a void that is not easy to fill. Typically it is older people that I have felt the most understood by. It, at times, has been a lonely trail but one that God has brought some people along specifically to encourage me. God has provided for my needs and is my steady support.

The new normal going forward

People throw the saying “your new normal” out very freely. It may be easy to say, but finding and accepting your new normal may not be that easy. It hasn’t been for me. A new normal for me consists of dashed hopes and dreams, sucking up my pride because I can no longer do what I could or achieve what I may have been able to. It’s a humbling process, one that my wife and I have been through a few times. By God’s grace I am determined to push on, focusing on his provision and leaning on him. People will say, but you are still alive, be happy, while true, it can be a process to get to the thankful point.

God continues to shape me, but it’s not always easy. He is my rock.

Some favourite songs of mine, click on links;

Josh Groban - You Raise Me Up
Carrie Underwood with Vince Gill How Great thou Art
Kari Jobe - The more I seek you 

 Some favourite verses of mine;

New International Version (NIV), http://www.biblegateway.com/
Philippians 4:8
⁸ Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things

John 14:14
¹⁴ You may ask me for anything in my name, and I will do it.

Philippians 4:13
¹³ I can do all this through him who gives me strength.

Hebrews 12:1-2
12 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, ² fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God1

Corinthians 9:24
The Need for Self-Discipline
²⁴ Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize.