Hey siblings and kids,
We were told from the beginning of Carol's diagnosis that there was no cure but that we can "manage it." Now a year down the road we have a better understanding of what it means to "manage it."
"Managing it" means living in cycles.
First there is the daily cycle of managing the schedule of medication. We keep track of 9 drugs and two kinds of insulin with a spread sheet. Horizontally are the days of the week and vertically the hours of the day listing the times and dosage for each medication, which varies throughout the week. There is a second spread sheet on which to track blood sugar readings, insulin doses and what has been eaten. It becomes routine, but we still need to check the sheet for ease of mind. Carol has the alarm on her phone set for the various times of day and night. Whenever it goes off … "Oh, it's time for …"
Then there is the weekly cycle. Our appointments for lab work and chemo are always on the same day every week. And so the resulting side effects also happen on a weekly cycle. At the end of each week you realize it is going to start over. Another week just like the past week.
The last cycle is a longer one of about 3 months. It is tied to the actual chemo drugs being tried. Knowing which drugs to use is not an exact science, rather it is educated guessing. Each trial of chemo drugs has to last around 10 to 12 weeks and then an evaluation to check their effectiveness. So we wait for test results and then adjust to a new round of drugs. Carol's first 3-month cycle worked well but the side effects couldn't be managed. The second 3-month cycle didn't work and resulted in the discovery of the tumor in the abdomen. The third 3-month cycle is slowly working but didn't work on the tumor. So the third 3-month cycle ended with two weeks of radiation to reduce the tumor and manage the pain. So in a few weeks we will do the tests and evaluations and start the fourth 3-month cycle.
In addition to the cycles, "managing it" means that you are constantly monitoring side effects and tweaking your dosages to minimize the effects. It is a delicate balancing act. You do get better at it…but it is a drag.
"Managing it" also means that you are constantly on the alert for specific symptoms for which you are to immediately call the treatment center. Because of your suppressed immune system, you need to be especially alert to symptoms indicating an infection, such as chills and or a fever. You guessed it, the alternating chills and fever were getting progressively more pronounced after the radiation treatments causing us to call the treatment center Thursday evening. This triggers a whole different set of tests checking for infections in the blood, intestines, lungs and so on. We spent all day Friday getting the tests completed. Now you wait for the results. Carol's blood counts are really low but her body seems to be "managing it." If things get worse the next step is hospitalization and a blood transfusion. Hopefully, that won't be needed to "manage it."
"Managing it" means spending a lot of time in medical facilities where you discover that we are all in the same boat and many are worse off than you. It is a sobering experience each time you walk into the oncology center.
"Managing it" means you slowly come to realize that this is going to be your life for the foreseeable future. It forces you to stop making future plans and live more one day at a time. Probably a good thing, at least more realistic knowing we don't control the future. Your perspective changes and you live more in the moments of the daily pleasures of existence and the small kindnesses of family and friends.
"Managing it" means you discover that you don't have the resources within you to save yourself or your loved one. Strangely you find that God is good, that He is your rock, your refuge and your strength. God is helping you "manage it." I've heard that all my life. It is different once you experience it.
So how are we doing? We are managing it.
Love and hugs to you all …. George