Thursday, Jan. 21, 2009
Yesterday, Luke told me he felt like his old self again, and this only two weeks after finishing radiation. THANK GOD. We won’t know for sure that we have killed all the cancer until we do scans again, scheduled for mid-February. All along the doctors at Dana Farber gave us an encouraging diagnosis–94% cure rate–but until we get the tests confirming those results for sure, I can’t help but hold my breath.
Thursday, Oct. 2
We’re anxious about tomorrow’s chemotherapy because of what happened last time. It continues to amaze me how I expect things to go right and am shocked when they don’t. Yet, battling this illness is changing my whole attitude about life. I used to be optimistic; isn’t that what you call expecting the best? Until my son got cancer. Even then, it turned out to be curable and at an early stage, so I found reason to feel lucky. Last time, I was honestly surprised when we ran into obstacles so early in his chemo treatment. And I wonder how I could have lived all these decades with such an inflated sense of safety. Now, I am acutely aware of my own vulnerability and the vulnerability of everyone I love, and it has made me fearful. What bad thing will happen next?
Friday, Sept. 26
Today has been difficult to write about because so many things went wrong. It is behind us now, thank God, three treatments down—five more to go, but we were shaken by the obstacles we faced today. I guess we figured we had this whole thing down. As unpleasant as it was going to be, we knew what we faced before and that we’d get through this treatment too. Perhaps we should have been prepared for the pitfalls because we’d been warned. I learned something about myself in the process: I’m either an eternal optimist or an ostrich with my head in the sand. The doctors had told us from the beginning there was the risk of his white blood counting getting too low for treatment at some point (due to the compromised state of his immune system from the chemotherapy) as well as the possibility of a vein collapsing and not being able to take the injection. Despite that warning, I never believed it would happen to us, especially this soon. It was only his third treatment!
First, his lab work came back that his counts were low—actually borderline, but because we agreed to participate in their study, it required absolute adherence to the treatment protocol. Since he was border line, we needed to wait a few hours to see if we could get those numbers up. Strange as it sounds, their suggestion was to get adrenalin into his system by having him do physical exercise—run around the building, up and down the stairs, jumping jacks etc—and then they took a blood sample again and we waited for the results. (I have since learned from a friend who was treated for breast cancer that in her case, they gave her a shot to get the blood count up.) Anyway, we waited four hours at the Jimmy Fund Clinic, long enough to hear the staff and parents chase after a boy named Marquito, who couldn’t have been more than four years old, while he screamed, “NO! I don’t want to go in there!” They finally cornered poor Marquito, who knew all-too-well what faced him behind the double doors, and dragged into his treatment. Luke and I sat on the couch, shoulders touching, saying nothing. A few minutes later, a couple walked by, the woman cradling a young toddler, who cried nonstop, while the man wheeled the IV medicine beside her, a line connecting them all in a tragic circle of pain, hope and fear. Finally, the word came that his counts were up and we sighed with relief because as awful as getting the chemo was, not getting it meant prolonging his treatment another week. But we weren’t done yet. Robin, our favorite infusion nurse, brought us into the room for the treatment. We were both tense. Like Marquito, we knew what was coming. She inserted the needle, began pushing the plunger of chemicals and right away, it was obvious something was wrong. The chemicals would not go in. She immediately withdrew the needle, saying we were going to have to go into another vein. I could see the sweat shining on his tense face as he looked at me. The nurse told him to breathe and relax. I tried to smile encouragement; “you can do this,” I said, but inside, I was screaming. We did get through it finally. Another treatment down—until the next time.
Friday, Sept. 12
This morning, I had a helpful conversation with Tricia, an infusion nurse at the Jimmy Fund Clinic, about some of the weird side effects Luke’s been having: achy jaw, headaches, painful red dots on his tongue, tired limbs, and arthritic-sounding joint pain—no surprise, they’re all related to the chemicals they’ve been giving him. Some symptoms may also be because of the abrupt withdrawal of pregnidsone, a steroid with its own list of nasty side effects that he takes in two-week cycles. Some suggestions for easing his discomfort were to give him Tylenol (after taking his temperature to be sure he isn’t feverish) and to discuss with the doctor tapering off his steroids dosage when we start a new two-week cycle next Friday. Since going to the clinic, we have seen a revolving door of health providers, received mix messages, and never actually sat down with a doctor in charge of Luke’s care. As Tricia said, “You seem to have fallen through the cracks; let’s get you out.” That’s welcome news for me because we went to Boston (Dana Farber, Children’s Hospital) to get the best care in the world and ended up feeling like a small fish in a very big pond filled with folks too busy to check his chart or be consistent in the information they tell us. (I can’t tell you how many times we’ve been asked if he has a central line.) Finally we’ll have one doctor who will be responsible for his overall care!
Thursday, Sept. 11
Last night my son showed me a clump of hair the size of a quarter that had come out during his shower. The doctors had warned us that hair loss was a common side effect of chemotherapy although we had also heard of cases where patients experienced hair thinning instead of total loss. I guess I had decided thinning was going to be it for us because I was shocked to see the hair in his hand and the look of resignation on his face. I asked him if he wanted to get it cut after school and he just shrugged. Every day this week he has been so tired and worried about his schoolwork. He has two tests today that had him up late last night studying despite the exhaustion and the ache in his jaw: Chemistry and A.P. History—two classes he’s really worried about. How can he focus on his studies when he is so tired and his hair is falling out? I offered to help him study but he declined, and I knew he wanted me to leave him alone so I did. Today, I’m trying to remind myself that this fighting cancer is a journey, one step at a time, and that we will get through it. Hair grows back. The loss is a temporary condition I tell myself.
And if I could take this from him, I would.
Friday, Sept. 5
We decided we prefer to think of it as 25% through the treatment, rather than two down, six to go. Chemotherapy today went much better than the first time around. For one thing, we were only at the Jimmy Fund Clinic for three hours rather than the six-hour marathon of our first visit. The actual chemo infusion takes about 15 minutes, and again, I find myself thanking God that’s it’s Hodgkins (highly curable) and that we caught it so early. Who would ever think you would count your blessings when your child has cancer, but believe me, I do because I know it could be a lot worse. Two images haunt my memory of this day: The first is a boy, probably 15 or at least close to my son’s age, who comes towards us while we wait in the clinic. He has one leg and is on crutches; his head is shaved and his skin is ashen from treatments. We don’t make eye contact. The other image is as we are leaving the “infusion area” where they administer the chemo. As I walk the hallway, I glance into a room and see a teen boy stretched out on the bed, his mother lying beside him while they watch a television screen suspended from the ceiling. Her face mirrors my heart, and I see myself in the set line of her mouth and the sad determination in her eyes.
Thursday, Sept. 4
Tomorrow is Round 2 of chemotherapy (six more after that) and although we’ve done well so far, there’s no way to predict how he’s going to feel after his second treatment. The week after his first treatment on August 22, he was really tired. This last week he has been more like himself; he actually worked out with his swim club two days in a row! Lowell High School has been fantastic—a twisted sort of benefit of being part of a large school—they’ve had kids with cancer before and have a process for supporting the children through treatment. We met with teachers, explained upcoming absences and potential roadblocks to academic success (for an honor student who had perfect attendance last year) and felt very supported by his teachers and staff. From Luke’s perspective, losing his hair, not being able to play sports, and dropping in grades are his major concerns. I’m trying not to worry about what the future holds for side effects or how bad he might feel; after all, the impact is cumulative, but we’re hanging in there. Better to take it one day at a time. He’s growing up fast though: having cancer has changed his perspective on what’s important and that has been a good thing. For me, I’m mostly just scared all the time. It’s as if I’ve suddenly realized bad things can happen to those I love and my whole sense of optimism is shaken to the core.
I’m also worried about how this whole thing is impacting my younger daughter. She hasn’t said much, but last night she asked me what would happen if she got sick? (I guess we’re all feeling vulnerable.)