What keeps us going in the face of adversity
We have had people ask us how we are staying positive in light of Mrs. r2e’s cancer diagnosis. It’s simple actually. We made a choice early on that has made a world of difference. That does not mean all is rosy. We definitely still have low points that challenge us. However, how we have chosen to react has helped us rise up from those lows.
Mrs. r2e received the cancer diagnosis in the emergency room. Not the ideal setting to learn about such a diagnosis (then again what place would have made it better?). When we were alone in her room we had a good cry about it. In the middle of that we apologized to each other for some silly things we had been going through before the diagnosis.
But then something happened. I remember this very distinctly. We just looked into each other’s eyes and we connected on a different level. I do not know how to explain it. We both spoke and made a commitment that we would do all we needed to do to fight this. We also committed to doing whatever was necessary to stay positive and be strong.
Over the last three years we have used some strategies that have helped us both through her diagnosis and ongoing treatment. The primary focus is on Mrs. r2e since she is the one with cancer. However, it is also important to recognize what the family and caregivers are going through too.
Faith is a VERY strong part of our lives. Many of our close friends are also our faith friends. We pray. We have many others praying, both near and distant, many we know and many more we do not.
We believe in the power of prayer. We also believe in the power of medicine and science. We are fortunate to a local hospital that is faith based and a leader in their medical field.
We also know that faith means different things to different people. Faith works for us. It may not work for you.
Take Care of yourself
It is so important to make sure that you continue to take care of yourself. There are so many challenges that you will face it can be overwhelming.
Nutrition. It is vitally important to make sure you find foods that you will like AND that will help you nutritionally. You will need to experiment a bit on this one. With Mrs. r2e’s cancer diagnosis it took time to figure out things that worked. And every time something worked, things changed due to the introduction of new medicines.
Something we also did was not trying to eat Mrs. r2e’s favorite foods during times where she struggled with nausea. Why? She did not want to associate her favorite foods with negative circumstances.
As an outpatient, when Mrs. r2e went through her chemotherapy we experimented a lot. The medications messed with her taste buds and also her ability to smell. More importantly, the side effect of nausea really impacted her ability to maintain her weight. For her, it was about mildly seasoned mashed potatoes, oyster crackers and low sodium vegetable broth. Find what works for you. Be sure to discuss with your doctor.
Exercise. Staying active is not only good for you physically but also emotionally. Know your limits and set new goals. Mrs. r2e is an active walker/runner – doing 3.5 miles a day. After her multiple surgeries and chemo she had to reset her expectations. We worked on accomplishing a walk around the inside of the house, graduating to a walk halfway down the block, then a full block, etc…Increasing distance and not worrying about time. Eventually returning focus on time.
And don’t forget about the caregiver. It is important that these folks stay active and fit to be able to provide support. I worked out deals with family and friends to visit so I could get out and rejuvenate the body, mind and soul.
Focus on what you can control
This is a hard one for a person who is OCD about being in control all the time (that is a reference to me). Mrs. r2e, on the other hand, is the one who has had to put up with my OCD control issues!
Honestly, it makes no sense to worry about what you cannot control. It is an emotional drain on you.
We both agreed early on that we would not dwell on the ‘shoulda, coulda, woulda’ talk. There is no sense replaying that old song. All it would do is mire us in a repetitive Ground Hog Day movie scene.
My biggest challenge was recognizing that I was not in control. I had to accept that I was not in the driver’s seat, I was just a passenger along for the trip. What was more challenging is I had to stop being a backseat driver trying to call the shots. While I am not in the drivers seat I am being an active advocate for Mrs. r2e and her care.
An interesting part of this discussion is that at work I would always tell people to stop speculating about things and bring me hard facts. What I initially found myself doing in Mrs. r2e’s case was speculating about things. A very good co-worker of mine pointed this out to me one day in a pretty frank conversation which helped me quickly change.
Reach out to others and let others reach out to you.
When something tragic happens most people will flock to help out. We experienced this first hand with Mrs. r2e’s diagnosis and also with a natural disaster.
Many people will tell you “Let me know if there is anything I can do.” This is comforting. Other people will tell you “Here is what I am going to do for you.” That is a blessing.
We had many friends start a meal delivery service for us. We had done this ourselves for others but never really truly appreciated what it truly meant until we were on the receiving end of this. This circle of friends basically said we are doing this, when do you want it and how much do you want.
Mrs. r2e has a very close friend who also went through a cancer diagnosis. They were so close that our kids used “mom” interchangeably between them. They could connect on a level that I could not. At first I openly told my wife I was jealous of this but later realized that this was a therapy I could not provide her.
I also have very close friends that stepped up to be there for me. My good friend who guided me through a faith formation at church. Another friend who was married to Mrs. r2e’s best friend and could relate to the spousal experience. A third friend who’s wife was diagnosed with breast cancer and saw the same oncologist Mrs. r2e had. These guys were always there if I needed them.
What about family? We are down in Texas and far from immediate family. At the start I had a brother an hour away but he relocated recently. We do talk with family more often than we did before as a result of all this.
Whatever you do, don’t go it alone.
Acknowledge that life goes on
This was a tough one. What do you mean the world does not stop and revolve around us when something bad happens? You see this all the time but maybe it does not connect until it hits you personally.
You see the headline news about a major tragedy. It is far away and while you see the impact maybe the lack of a personal connection does not keep your interest to long.
When something happens to you directly or someone close to you, you might wonder how or why the world around you continues on. Well, that is life. Life does continue on. Those around you have to make a living to keep going on. They will go on vacations. They will post cool things on Facebook.
That does not mean those close to you don’t care because they do care. They are not continuing on as usual to piss you off. They are continuing on to fulfill their lives.
Once we accepted that other people had their own lives and we did not take it personally it made it easier. When we looked at Facebook updates we tried to flip negatives to positives. Instead of saying “wish we could do that” we started saying “we will do that when things get better.”
Get to know your diagnosis
We were thrust into Mrs. r2e’s diagnosis on an emergency basis. We went to the emergency room, got testing done and within an hour we were told she has a large tumor with a 99.9% certainty that is was cancerous. Hell, we went into the ER thinking maybe there was some simple intestinal tract issue.
Once we got through the emergency surgery we started studying up on what her diagnosis meant. I listened intently to the doctors, wrote down everything and then googled it. At the time I worked at a hospital, so I would call or text doctors or administrators to bounce things off them (something I know the average person does not have access to.
There is one specific thing with Mrs. r2e’s diagnosis we do NOT focus on – prognosis or survival rate. It is not that we were burying our heads in the ostriches preverbal sand trap. We were quite aware of the severity of the staging diagnosis. We just chose not to become Vegas odds makers with this topic.
Number one, survival rates are just averages and we were not going to be part of the average. We were going to be the exception to the rule and take this head on.
Number two, survival rates are typically dated. By the time official studies are started, go through trials, get written up, peer reviewed and published they are older than new treatments that might be available.
Chunk it Up
We were overwhelmed right off the bat with the diagnosis. Going from a great suburban life and zero health issues to the ER, to emergency surgery and diagnosis of cancer was a lot to absorb in less than 12 hours.
I have a favorite saying. “Chunk it up.” No, not at all related to chunky style puke. I could have easily said “Break it up” but where is the fun catchy word in that? Anyway, what this means is take a big thing and chunk it up into smaller pieces. That way it becomes a more manageable thing and you can also celebrate some small wins along the way.
We knew that there would be a long road ahead. The staging diagnosis meant that this would be a lifelong chronic condition for Mrs. r2e. We decided we would take things one day at a time. Take it in small stages, celebrate the small accomplishments and if something new came up, repeat.
Our new mantra is “As long as today is better than yesterday we are moving in the right direction.” And a key to this is that “better” was not defined – it could be as big as being declared NED (no evidence of disease) or as small as being able to get up out of bed without puking due to the nausea.
In the just under three years to date we have broken the journey into these smaller legs:
1) Get through emergency surgery and recover
2) Go through Round 1 of Chemo and recover
3) Be told that she has NED (no evidence of disease)
4) Have surgery to reverse the first surgery
5) Be told cancer is back and go through a second major surgery and recover
6) Go through Round 2 of Chemo and recover
6) Be told that she has NED (second time)
8) Change Oncologists
9) Be told cancer is back and start Round 3 of Chemo
Side bar conversation. Why do I use the term “NED” (no evidence of disease) and not “cancer free?” Due to the simple fact that at the stage Mrs. r2e has been diagnosed she will not be “cancer free.” It is about keeping the cancer in check ( or in “remission”).
All of these things help us cope with the situation. I do not want to suggest all is good – it is not. We still experience low points pretty often. When we do, we let it all out there. We shed the tears. However, we are convinced that the recovery from those low points is positively impacted by the items above.
What things have you done to help you through adversity?