Today I drove the 110 miles (each way) between our home and Boston to go to MGH (Massachusetts General Hospital) for a CT scan. Driving myself to these appointments is just one of the ways in which I have become more independent than I was previously. When I expressed interest in participating in the clinical trial, I was warned that it would mean both a considerable time and travel commitment on my part. These seemed small considerations given what was at stake.
The trial drug is administered orally in tablet form and I am able to take my twice daily dose at home. However, I am required to be at the hospital two days a month for blood tests and physicals. This is both for the purpose of collecting data and to monitor my health. I am also given a spiral CT scan of my chest and abdomen every two months for the same reasons.
I have received so many CT scans over the last 4 years. I just can’t dwell on things such as the secondary exposure to radiation that is part of my treatment. More of that between a rock and a hard place. Instead I focus on the fact that I am so very fortunate to have such state-of-the-art care available to me. The spiral CT scan makes early visual detection of any minute changes in the areas that are monitored possible. This provides important information as to the efficacy of the drug to my doctors and the trial researchers.
Before I was enrolled in the trial I would become very anxious a week or so prior to each scan (scanxiety). This was with good reason–as I never had a completely clean scan. These “dirty” scans meant that I could never say that I had no evidence of disease, or, “just call me NED”. This was obviously very difficult on the one hand–no respite from my disease. On the other hand, perhaps I was not as surprised and thereby more prepared emotionally for recurrence. I don’t wish to imply that it was anything but devastating to make that transition to “terminal” and I will certainly devote more time to that in another blog.
But back to the subject at hand–my bimonthly CT scans.
I really don’t get very anxious anymore. This is in part because I feel so good and am therefore more confident of a positive outcome. To be honest, when your scans are two months apart, there is very little time between them in which to get nervous.
On the day of the scan, you are required to fast for two hours prior and to check into radiology one hour before the scan. Then they hand you two 450 mL barium sulfate “shakes” that you need to drink within the next hour. I have begun to dread this. I don’t know if it’s my brain or my stomach, but it just gets harder and harder to swallow (literally). Today I felt pretty darn nauseous, and I think I will speak to my oncologist about whether or not I could take an anti-nausea medication on the day of the scan. The last thing I want to have happen is to vomit and have to repeat the whole sequence of events.
At the time of your appointment (well, things don’t always run on schedule) you change into a johnny (why do they call them that?) and take your place in a waiting room that is always several degrees colder than comfort would dictate. Blankets from the warmer are available on request. Sometimes the patients chat amongst themselves about various diagnoses–other times you wait in chilly silence. When your name is called you are led to a room where an IV is put in. The nurse in this department refers to those of us who are frequent fliers as the “poker” club. One side effect of frequent visits can be “tired” or fussy veins. Today a young man is training. The nurse instructs him to use a pediatric needle for me, as my veins are not only tired but roly. We are all relieved when he gets the IV into the first vein he tries. Then it’s back to the waiting room to wait for the actual scan.
The scans themselves are no big deal. Actually–I take that back. You are required to hold your breath, and although that is no problem now, when I had extensive cancer in my lungs it was not easy. For the last part of the exam, they inject a radioactive contrast agent into your IV. After a few seconds you get a really warm feeling in your mouth and your groin. And then, after perhaps 10 minutes on the exam table–you’re done.
Waiting for results is never easy. Sometimes it’s several days or more: this time I only have to wait two days, as I have an appointment with the trial team on Wednesday. At that time I will find out whether the cancer is still being held at bay.
I just came across your blog and signed up. My life suddenly changed from being very active and full a couple of months ago to what seems like a nightmare that I keep hoping I will wake up from. It has been a rollercoaster of being told I didn’t look like cancer to suddenly have a large malingant tumor and lobectomy of LLL. Was told before surgery not chemo or radiation would be needed and then day after OR that I would be receiving chemo.tx. each month for four months. Due to a nurse administering oral antibiotic improperly severe stomach ulcers and other GI complications kept me from eating, added extra hospital PO days and another admission for dehydration and delay of chemo. Still can only eat full liquids and a few soft foods but beginning chemo soon. I am hoping as I explore your blog archives I will receive the courage I seem to have lost somewhere along the way. I had it in the beginning but the weeks of stomach pain and other stresses have somehow made me feel like I have lost myself along the way. Thank you for sharing your journey to encourage others. I was dx with non small cell stage 1 and told without chemo I had 50% chance of recurrence and with chemo would only have 20%
I can relate to the feeling of a nightmare. Hearing you have cancer is something nobody wants to experience. Unfortunately, once you’ve received your diagnosis, the treatments themselves usually make you sicker. It just sucks. I too lost myself for some time, but ultimately ended up finding, well, a better self. Not that I’d recommend cancer for self improvement, but it really does shake you to your core. You will find yourself and your strength again. Don’t be too hard on yourself though–it isn’t easy. Take good care,