“Why can’t Aimee and Graydon come over tonight, Mom?” was the challenge my youngest boy, David presented to me this morning. He had such sadness in his voice as he slouched in the big arm chair, waiting for my response. Aimee and Graydon and their Mom, Gwen, are long-time and dear family friends who typically come over to celebrate with us when there are occasions to celebrate. Since I have had cancer, however, company has been very restricted in our house – especially to children. This cancer nonsense has been both a blessing and a curse to my family and I. There have been times when I know we are closer as we struggle to work through the challenges and changes together. There have been times when I wonder if the children resent that their Mom is ill? Cancer has thrust them into the role of care-givers at a variety of levels, whether they like it or not.
I didn’t know how to answer that question since the answer would be heavily influenced by events of the previous 48 hours, beginning in the middle of the night four days after my immune booster shot.
“Kevin?” I whispered. “Are you awake?” I didn’t really need to ask as he almost snapped to attention in the bed.
“Yes. What ‘s wrong?”
“I am in a lot of pain. I’m not sure if I should be worried.”
“Where is the pain?” Kevin inquired with concern.
“It seems to be my lower back, but I’m not sure.”
The pain had begun earlier that day, but I had expected it to be similar to the pain I felt in my knees with chemo. And that – was nothing to speak of. This one, however, was something new. It was reminiscent of the pain one feels with the flu.
“Is there something I can do?” Kevin asked, now sitting bolt upright.
“No. I am just more concerned its not my kidneys or anything like that. I looked up my symptoms on the internet and it seems that I am experiencing the side-effects of the immune booster shot.”
“Let me help you back to bed and we’ll look.”
Off I shuffled (at this point) since every time I shifted my weight from leg to leg, my back ached. I knew I was hunched over and that Kevin was surprised to see how much I had deteriorated from earlier that evening. I was worried too. It was the fear of what was really happening that was the worst. I made it to bed and as I lay down the pain shot through my hips like someone had punched me. I winced in pain. It did not stop. Another shot of pain and my back started to spasm. That was the worst pain I had ever felt… yet. I had been up with Ben earlier and found that if I was very still, the pain would subside. At that point, I couldn’t lay on my sides as it seemed my pelvis was collapsing on itself.
“It looks like Tylenol is not effective, Stacey, according to patient reports. But what you are describing is what some others have also described. It also looks like some people have had to take Oxycodone for the pain. Another thing that seems to work for some is Claritin. That’s weird. Most report relief from Neulasta by using Claritin. Do you want me to get you some?” Kevin searched desperately to help.
The pain shot like daggers. The problem is figuring out what to do since it was late and I don’t want to create any bigger emergency by taking drugs I am not supposed to be taking.
“I think I’ll have a shower and take Tylenol. Maybe the heat will help?” I decided with anxiety and desperation. “The chemo was nothing compared to this.”
And off I went.
I got some relief after the hot shower, but my walking was significantly worse and I was going down hill quickly. I could not lie down, I could not sit up. Every time I moved I was hit with another wave of pain. Finally, I lay down on my back, and filled with Tylenol, remained perfectly still. The drone of the pain was about a level 4 out of 10. If I was still, I was at least free from the contractions – or whatever they were. And the night droned on. I tried to sleep ….
Finally at 5:30 am, Kevin came in to check on me. I had not slept, but at least I knew that the pain was my immune system re-growing. That had to be worth something.
“I know why some people would rather give up than fight cancer, Kevin. I’m not giving up, but I get it. That was the worst pain ever.”
As the morning dawned, I became more and more uncomfortable. There was no relief. Kevin called the hospital to talk to my nurse, but was not able to connect with anyone. What to do? How long would this last? My God – the pain was intense – it brought tears to my eyes… I was becoming desperate and angry.
“Fuck it. I am not going to give in to this.” I decided. (If I exercised and tried to imagine the good things that much be happening, I thought I would at least put the fear associated with the pain to rest.) I got up. I showered. I dressed. “I would like to go for a walk, Kevin.”
You can imagine his surprise. “Okay. Are you sure?”
“Maybe it will help to speed things up – or move them along? I don’t know what else to do. Maybe it gets worse when I am just still? I would like to try. I want to get over this and maybe movement will help. We can just do a short walk.”
Off we went. I took out the shovel. A couple swipes and that ended that. We began. The pace slowed. I took Kevin’s arm and 20 minutes later we had only walked down the side-walk. My husband supported me as we shuffled up and down the side-walk. Tears strolled down my face as the pain shot through me. We kept going. “This has to work.” I said.
“Let me know what you want, Stacey.” responded a very anxious and clearly upset Kevin.
It was all I could do to struggle back to bed after we came inside. “I don’t think that worked.” I sat on the edge of the bed thinking that I would not be able to get through that day. I cried. I couldn’t help it. This was my test of strength. Chemo had been a play toy. Cancer finally got real. “I am not sure I can go through this again, Kevin, if they tell me I need another shot.”
Poor Kevin. I knew he was struggling – what can you do when someone you love is sitting right in front of you in so much agony and you can’t do a damned thing? I still maintain that having cancer is so much easier than watching someone struggle with cancer. I am less of a victim than my family is. He was helpless. There was nothing he could do – except be with me. And that is what he did – for the remainder of the day and through the night. We watched television. We listened to mindfulness tapes (sort of). We talked. We lay still.
Nearly 24 hours later, the pain began to be more tolerable thanks to heat, Tylenol, stillness, and my hot showers. I think I fell asleep several times during “House”. Cat naps, but still, they were a sign of better things to come. And that was all I needed to know – that I was moving in the right direction.
Nearly 48 hours later, the pain has taken a back seat. I am still in pain – level 2 – consistently. I now know the short-term impact of chronic pain. I now try to find the balance between meds and no meds and am grateful for relief. I don’t know how people with chronic pain do it. That is the real test of strength – to continue to live in spite of such an obstacle. Nearly 48 hours later, I am preparing for New Year’s Eve. It will be a quiet night, no doubt, for Kevin and I who feel rather “shell-shocked” from the previous 48 hours. The toll cancer has taken on us as a family has begun to show through Kevin. I worry. He was so worried. Nearly 48 hours later, I don’t know how my tears and absence impacted Ben or Katya. Did it take a toll? That is a question for our family talk tomorrow. How can a family remain unscathed by “cancer”? Will it bring resentment or will it bring us closer? Our lives will never be the same. Is that a blessing or a curse?
“So, why can’t Aimee and Graydon come over?” David inquired again. I looked at him carefully to get a read on how much information he needed to know. I wanted to share what needed to be shared to answer the question in a reasonable manner. But, how much information to hold back… that’s the rub.
“It’s my turn to play, David. We must all take turns. I only have so much energy and strength. You had a friend over yesterday. Now…. it’s my turn. Do you understand?”
“Oh, yes, Mom. Anything I can do to help you get ready?” he offered?
“You just did, David.” I exhaled.