Usually EJ gets out of work at 10:30 p.m., but last night he worked until 3:30 a.m. By the time he got to bed it was about 5 a.m. He was exhausted by his long day, but he only was able to get 4 hours of sleep before he had to get up to take JJ (and me) to the lab for his bloodwork. JJ had to get both the weekly and the monthly tests, so they took four vials of blood from him instead of two.
When I tattled to the oncologist about JJ’s most recent health issue, the doctor gave us a simple home remedy to try. He must have had second thoughts because before we left for the lab this morning, we got a call from the office of a specialist who said that our oncologist wanted JJ to set up an appointment with him within 1 to 5 days. Yeah, right, Monday JJ begins his intensive week of Chemo for five hours every day…just when are we supposed to fit in an appointment? When I told the nurse that JJ had Chemo all next week, she asked “Could he make an appointment one afternoon after he is finished with Chemo?” You’ve got to be kidding, right? JJ is expected to endure five hours of Chemo, and then go get examined by another doctor when he’s fighting fatigue and nausea. JJ’s face got panicky and stormy and he whispered to me, “I am NOT making any appointments next week! I am NOT!” In a sweet voice with a Mama Bear growl just under the surface, I told the nurse on the phone, “It is not possible for JJ to schedule an appointment next week…” and the best we could do was make an appointment for the morning of January 20–about two weeks after the oncologist wanted him to go to the specialist. As EJ drove us to the lab, I called our oncologist’s office and left a message with the nurse informing her that JJ couldn’t make an appointment with the specialist in the time frame the doctor wanted. I can understand the oncologist is concerned how JJ’s new health problem will affect him during Chemo, but we have only so much time and energy in a day. We just can’t add another thing to next week. I haven’t heard back from the oncologist nurse yet.
Our family loves well-written movies and TV programs, and we are always quoting from them. During each week of intense Chemo, I have been buying JJ shirts with our favorite movie/TV program quotes on them. I drool over the cool shirts I am buying JJ, and if JJ ever stops wearing them, I am seriously tempted to steal them from him. The last shirt I got for him was from a favorite program from the early 2000 called “Firefly.” As we drove to the lab, JJ said, “I should have worn my ‘You are beginning to Damage My Calm’ shirt because my calm is seriously getting damaged.”
TR, another patient of our oncologist who has the same cancer as JJ, warned JJ that during each cycle of Chemo he will feel worse and take longer to recover. I think that even if JJ doesn’t get physically sicker at each cycle, he is definitely getting more emotionally and psychologically fatigued–more tired having health problems, and more tired of medical procedures, and more tired of medications. Poor guy.
And, of course, EJ and I are tired as well. We are mostly doing well, and our spirits are mostly really good, but we all are definitely aware that this is a marathon we are in, not a sprint.
Yesterday I was tired from no sleep the night before, but I forced myself to make chili for today because I knew that I probably wouldn’t have time to make anything when we got home from the lab. It was nice to be able to just warm up the chili today for lunch.
Shortly afterwards, EJ had to leave for work–after only four hours of sleep. Poor guy.
Our friends bought us another gift certificate for Chubby’s Cafe, so I ordered takeout for supper and then walked down to get it. JJ is never sure what he will be able to eat during his week of Chemo, so he enjoys eating favorite meals on his “off” weeks.
On a lighter note, EJ told me that when his co-worker makes hats, she always chooses the softest type of yarn she can find. And she always runs her hands through the skeins of soft yarn to find the softest of the softest yarn. JJ’s orange hat is extremely soft and comfortable on his head, so he wears the hat constantly during the day. I am getting used to looking over at an adorable bright orange-headed son. I can’t help but compare him to the old Raggedy Andy dolls (I had one as a child–my sister had Raggedy Anne) or a cartoon character in Japanese Anime. I just have to smile.
Tomorrow is Shabbat. We are going to REST tomorrow as we prepare for another busy week of Chemo.