On being a non-patient

In between chemo cycles is a no-man’s land of waiting and watching. In many ways, you’re a non-patient since there are no nurses and doctors watching your every vital sign.

After the first cycle your daily routine at this point is as close to normal as it’s going to be for a while. A large handful of meds each morning and night to bolster your body or to diffuse side effects of the chemo itself. You look forward to the small bits of events and socializing you can do. You go to work to keep busy and to keep the budget happy. Sometimes it’s easy and sometimes it’s the last thing in the world you want to do. It’s good to be outside of your small prescribed universe for a while and to accomplish definitive tasks but… There is always that but…

And you watch. You watch what you eat. You watch your activity levels. You watch your pain levels. You watch for new issues. You watch for ways to attack those issues.

You’re really in an in-between world. It’s not apparent to the world what you are dealing with. At this point you still have your hair and your counts are good enough that you don’t have that wasted look. You’re neither here nor there on the functioning scales. Some days are better than others. And some are oh so much worse. With strength you didn’t know you had, you continue to move forward despite everything this disease and its unrelenting treatment throws at you. There’s a quiet courage that comes from deep within that makes it possible, however difficult, to keep moving. While you may not feel it, that courage and strength, even when you are at your lowest points, are there. Those who know you can only feel the greatest admiration, love and gratitude for that power within you. That power that fights all the things that can otherwise break you… you refuse defeat.

Each day is a triumph of will. Each day a step closer to the goal of health. You look to each milestone… some having to do with cancer cycles and some having to do with the joy of life…. Babies, graduations, weddings. Time with friends and family to celebrate those points of the year… birthdays, holidays, the changing of the seasons.

The rest of us can only watch in awe as you continue on with grace, dignity and humor.

Rich had a pretty tough couple of days… it’s rough on him and tough as a caregiver to witness. Since we had held off on acupuncture during the chemo week, stomach pain hit the maximum threshold levels. The medications he was given before and during the infusions masked the pain and when it wore off… his regular pain meds may have well been M&M’s. A trip to the acupuncturist resolved that and we vow to continue with treatment regularly despite any scheduling issues… this is too important to put aside even for a few days. Unfortunately at the same time the Neulasta shot kicked in with its accompanying bone pain.

After my father’s stroke, he began to get severe nerve pains. When he told the doctor about them, he was told that was a good sign of healing. Dad’s response? “Well my good signs are killing me!” And it’s true. We can only accept that pain means the drugs are working and this is a positive sign. But OH! How those good signs hurt! Today we found a solution on some internet forums… forgo the narcotics and instead take Advil and… Claritin, of all things. With stunning result… it worked! Additional meds were prescribed to help with the bloating and localized weight gain. Two types of antacid meds and a water pill are added to the boatload of medications. Prednisone makes it difficult to sleep so Ambien is prescribed. That box for medication is getting bigger and bigger!

And what a Catch-22 of absurdity when the Ambien makes you almost impossible to wake up BUT the water pill makes you gotta pee seemingly non-stop ‘round the clock… lurching towards the bathroom in the middle of the night like an extra in Walking Dead.

Healing sleep comes, ten pounds of water weight is gone. Acupuncture is started again and the stomach pain is resolved. Allergy meds get rid of bone pain.

Through it all, Rich continues with his good humor and laughter… always laughter. And again, I’m in awe. Absolute and complete awe.

Rich, at work during chemo cycles. Tired beyond words, but doing everything to make everyone laugh.

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