Those of you who know Grant know that he is an amazing kid. He is so smart and has a wicked sense of humor. I am often blown away by his play on words or his thought processes. However, this same quick tongue can also get him into trouble. I am constantly telling him to “know your audience!”
Grant hasn’t shown much outward stress to Dave’s illness. When Dave first sat him down and explained to him that he had cancer, that he would be having surgeries and chemo but that everything would be alright, Grant accepted it wholeheartedly. In fact, he was so relaxed about the situation last year that he even took a little bit of advantage.
Dave’s liver surgery was in December, and I spent most of my time at the hospital. The kids were left to themselves at different points, but they were all old enough to handle it and look out for each other. One night I came home and watched Grant playing a video game. I laughed and commented about one of the odd “lego headed” characters. The next night, I came home and noticed the video game box. It looked a lot like a game that I had bought for Grant and put away for Christmas. Confused, I asked him why he asked for a game that he already had. Well, long story short, he had helped himself to his Christmas present early and planned to just put it back before I noticed!
He’s too smart for his own good, but he has a mom who is pretty with it too. This year I have a new hiding spot for gifts.
From the first conversation, I knew that Saturday was going to be a rough day. Saturdays before chemo weeks are hard. Saturdays before chemo and scan weeks are the worst. I started my day being peppered with questions about how I had handled assorted issues during the week. None of my responses were adequate. I kept reminding myself that Dave is anxious. I turned the other cheek. I remained calm. I even identified the elephant in the room. “I understand that you are stressed about Tuesday, but let’s try not to let it ruin the weekend.”
It was such a beautiful day that Dave asked what I wanted to do. I mentioned that I would really like to go to the National Book Festival. This idea was met with utter silence. So, I came up with alternatives. There was the Dulles Plane Pull or a multicultural festival in Reston. But the reality is that I was frustrated. I wanted to go to the Book Festival. I took a deep breath and swallowed down my words. We ended up taking the dogs to the dog park and then headed to the multicultural festival and had a great time.
For weeks, we had a dinner on the calendar. I asked Dave to run to the store to grab something that I needed to bring with us while I took a shower. When he got back he had hundreds of dollars of groceries and a full trunk load of bags. Everything except the very thing I had asked him to get. So after a day of tongue biting, repressing feelings and being understanding, I snapped. Honestly, I told him that I felt like my thoughts, ideas and needs were completely ignored. This went over well as you can imagine. So, Dave headed off to the dinner, and I stayed home with Parker and Grant for a marathon of Tanked. I was sad to miss an evening that I know was full of interesting conversation, laughter and intellectual topics. But I was relieved to have a break from the stress.
For those of you who have said I am strong, supportive, loving, giving. I am. Except when I am not.
Today will be a better day.
You can’t get mad at someone with cancer. FALSE.
They are still the same person they were before the diagnosis with the same annoying habits and ability to push your buttons. There are a few big differences though. I try SO hard to let things slide. I remind myself that Dave is stressed or tired or feels like garbage. When I do finally reach my breaking point and get angry, there is guilt involved. A lot of guilt. Then I forgive myself because I am only human.
You will feel a need to do everything they want to do. TRUE
I hardly ever say no now. You want to go out to dinner? Sure. You want to go to Disney World in July during one of the most crowded times of the year? Why not? You say you want to get a puppy? What a great idea! There are times when I think “What about what I want to do?” Then I feel selfish.
Living with cancer makes you appreciate every moment. FALSE
It would be great if that were true. The reality is there is still work and laundry and dentist appointments. So much of our time is spent doing the same stuff we were doing before Dave’s diagnosis. I think that we make more effort to spend time with friends now and dedicate at least a part of our weekends to doing something fun as a family.
People will offer to help. SO TRUE
I don’t think there is a person out there who hasn’t said “Please let us know if we can help.” We appreciate that very much. But the reality is that unless your name ends in Tremaine or Thompson, it is highly unlikely that we will ask for help. It’s embarrassing. It would be admitting that we couldn’t handle things on our own. It would remind us that our lives have veered off course. We know this, of course, but acknowledging it is a totally different story.
I am not a huge fan of the unknown. I avoid watching super suspenseful movies because I can’t handle the stress. It wouldn’t be particularly unusual for me to skim the end of a book if I am worried about a character’s fate. Uncertainty makes me twitchy.
Dave had a scan mid-August. The doctor said that nothing had changed and that was good news (https://embracingtherollercoaster.wordpress.com/2012/08/15/more-not-bad-news). After I got home, I read the scan report that was given to us. Words like cavitary, renal, and hypodensity jumped off of the page. Certainly none of these words had been mentioned at the appointment. A quick Google search revealed nothing. I could read the definitions, but I certainly couldn’t understand what the implications were for Dave.
So I waited patiently for Dave to decide if he wanted to discuss this with his regular doctor who had been out of town. I tried not to seem overly concerned which is part of my job as supportive wife. A week later, he sent the report and scan to the doctor he had seen at Johns Hopkins. Today, he FINALLY discussed it with Dr. Spira. We learned that “cavitary” could be a good thing. It could indicate that one of the pulmonary metastases is dying. Unfortunately, Dr. Spira didn’t want to weigh in on the renal hypodensity. He feels that we will know more after the next scan. More waiting and wondering.
“I said to my soul, be still, and wait without hope, For hope would be hope for the wrong thing. I said to my soul, be still, and wait without hope, For hope would be hope for the wrong thing. I said to my soul, be still, and wait without hope, For hope would be hope for the wrong thing. I said to my soul, be still…..”
I think that the best thing that you can do for someone who is dealing with cancer is to stay in touch. (This would be #1 on my list of “Things I am SO Glad that People Did or Said”.) We have so appreciated each and every email, message, voicemail, phone call, text. When we were still reeling after our world had been rocked, I remember looking around and seeing people going about their lives as normal. Frustrated that life could just go on in the midst of all our craziness made me feel like we were all alone. Then I would come home and there would be a card in the mail, and I would be reminded that we will never be alone. We have a huge network of love and support.
There have been some MVPs of staying in touch. For Dave, his biggest supporters are two women that he barely knows. One of them, Lora, he has only met in person once or twice. The other one, Helen, is my brother’s mother-in-law. Both of these supportive wonderful women are cancer survivors. They seem to know how important it is to stay in touch regularly and so Dave receives cards or care packages once a month. For me, I would have to say my sister-in-law, Michelle, has been incredible about staying in touch. I get quick text messages of support and love all the time just to let me know that she is thinking of us. Michelle’s mom is Helen. I guess when you have gone through it, you realize how important it is to have people checking in on you.
I feel like relationships with friends and family have actually been strengthened over the last year. We have reconnected with friends that we hadn’t seen in a while, spent more time with loved ones, and learned to enjoy every moment we are lucky enough to spend together. It’s a shame that it takes something catastrophic to bring people together, but I will take it.
Dave had chemo last week. By Saturday he felt awful. Fatigue and stomach malaise were the biggest issues. He was grumpy and short tempered. This seems to be the day he feels at his absolute worst after infusion. Then each successive day seems to get a little bit better. He starts to feel almost completely back to normal by about Tuesday of the week following treatment.
The Saturdays of the weeks he doesn’t have chemo are not much better. He is anxious and stressed. I can’t begin to imagine how challenging it must be to finally feel better and then have to gear up to do it all again. So we stay busy. We make plans and find things to look forward to. This is our new normal, and we are starting to get the hang of it.
Another chapter in my book (which truly only exists in my head) would be entitled “Cautionary Tales”. When people find out that someone has cancer, instinct tells them to share success stories. I am quite certain that I have done this myself. We found that hearing about someone’s uncle, cousin, friend, coworker was not always reassuring. It was not necessarily comforting, and sometimes it was actually annoying. We smiled and said “Thank you for sharing.” And we kind of meant it.
When Dave’s diagnosis was fresh in our heads, we couldn’t really process or appreciate these stories. We could understand that they were being shared for only the best of reasons. But no one told me a story about someone who had colon cancer that had metastasized to their liver in three spots and then went on to live to be 100. As people were sharing via email, phone, in person, I found myself thinking: not the same kind of cancer, not the same age, not male, other health problems, not the same stage. I was happy that their person had beat cancer and gone on to live a full and happy life. At the same time, I was bitter at the heaping pile of cancerous fate that we had been handed.
As we traveled on our new path for a while, it became easier and more comforting to hear stories. Over time, we could hear the positivity that was being gifted to us. I still have times when my eyes and brain glaze over when someone is sharing their story, and I hope that my lack of a poker face doesn’t offend. Because even if I don’t want to hear your tale, I do appreciate the underlying optimism, love, and support.
I guess this is my long winded way of saying to share your stories cautiously. Try to get a sense of how the person you are talking to is reacting. They will know your heart is in the right place. And they might appreciate it if you feign ADD and move on to another topic.
Please know that anything in the “Cancer for Dummies” writing is not aimed at anyone in particular. It is just my opinions and a reflection of what we are going through.