Had an easy drive into Boston for my hearing test, an amazingly easy ride in; light traffic, cloudy skies, misty rain. Arrived at the audiology office and went right in for my test. My audiologist told me that they had many cancellations due to the weather. Seems the eastern part of Massachusetts bore the brunt of the rainstorm. We did the three part hearing check and it turns out that my hearing has slightly improved. Well, truth is I had less wax and fluid (isn’t that just what you wanted to know?) than the earlier tests. So, we are good to go on Thursday with the chemo cocktail. Stopped for soup and a bagel at Au Bon Pain in the hospital lobby. The ride home was a bit taxing. The rain and wind picked up, traffic was moderate to heavy. In Worcester just now, the rain has changed to big heavy snowflakes. We are SnowCity!
Now to BeJae’s questions. First: “You mentioned that you have a chemo port so that they don’t have to stick you every time. Is it in your chest? Does it bother you to have it there in between treatments? Does the chemo go into a vein? Does it circulate through your system?”
I have a Bard Power Port. It’s not expressively for chemo, but for anyone who needs constant access to the veins, especially when the veins are hard to access. Chemo does a number on one’s veins, so I’m real grateful for the port. The Power Port has two channels. Special needles are poked through the skin into the port’s dual membranes. Some magic happens within the port that funnels fluids in (IV fluids, chemo, medicines) and out (blood.) The other end of the port is connected to a large vein. In my case, the placement of the port was as close to the tumor as possible. If you feel my upper chest just below the collarbone but as close to the shoulder as to not interfere with muscular movement, you will feel a well-defined lump. The port is placed under the skin like a pacemaker. It’s good for over 1,000 punctures. I’m not counting. How did it go in? I lay down in pre-op, took a nap, and woke up with a lump on my chest. Oh, and a really cool purple and gray bracelet! Port went in on February 1st, in service the next day. I notice it’s there when I make extreme movements, no pain just awareness. My port rocks!
Second: “When you’ve described the side effects … well, I guess they aren’t side effects … they’re primary effects, intended effects … those effects seem so specific to your tongue and mouth. If the chemo circulates through your system, how does it end up at such a specific site? How does it, in ridiculously non-medical terms, know where to go?”
There are two flavors of side effects, the immediate impact of the chemo cocktail on the body which lasts for about six days, followed by the working side effects which last about eight days (maybe a little more, but when I’m on the way out of the effects, I feel lighter.) The immediate side effects are things like nausea, hiccups, and fatigue. The working side effects are due to the attack by the chemo on all fast growing cells in the body; they include pain (in my case concentrated in the mouth, throat, and on the tongue), major fatigue, lack of appetite (nothing – not even coffee – tastes palatable), loss of hair, tender skin, “short-circuited” joints (missed that one) and so on.
The chemo doesn’t know specifically where to go. It attacks all fast growing cells. The tumors are the primary targets, but the chemo can’t differentiate between cancerous cells and say, the fast growing cells in the wall of the mouth, on the tongue, in the sinuses, and in hair. The chemo cocktail prescribed for me at Dana Farber is particularly effective for treating my type of tumor.
Third: “Other than some general fatigue, do you notice other parts of your body besides your mouth, tongue and throat that are involved in the chemo reaction? I know you say that you feel cotton-brained … but, do your knees ache? Your shoulders? Do you feel like you have the flu?”
During the first cycle, my back and legs ached when my bone marrow kicked into high gear and pushed to replace the white blood cells. My body is weird; wherever there are fast growing cells, there is change. Head hair is generally the most noticed (and can be traumatic) but in my case, I went with the bald look pre-cancer. I certainly notice, though! My razor sits in the medicine cabinet looking forlornly at me every morning. My beard is gone except for a smattering of hardy white bristle hairs; I don’t shave them. I figure they’ve earned it. But body hair is affected all over. All over. Every shower is an adventure. Use your imagination. I use a heavy hair filter over the drain.
I don’t feel like I have the flu. Chemo is a unique feeling. Frankly, I feel like crap, especially when the chemo is doing its primary job. But the approach to how I feel, both in painful areas like the mouth and my general malaise (which is mind and body), is far different. Chemo does not make me sick in the sense that the flu does. Chemo is part of the cure. Chemo is the road to getting well and getting my life back. Chemo is my friend, but a friend that has to cause me pain to help me.
Thursday, they hook up the port and infuse me with the chemo cocktail and other fluids. I know it’s the beginning of at least two hard weeks, but I say “Bring It On!” because the treatment is the way to regaining my health. The infusion room is an inspiring place because most everyone is in a good mood as this poison is pumped into their veins. Everyone knows what’s coming. Everyone understands the price. But the smiles and humor express the hope in the room, the hope and faith that is so necessary for recovery.
Thanks everyone for your support and comfort. Happy Monday and stay dry!
Love…
Richard
I’m off tomorrow to Greensboro, NC, where I was born and grew up, to visit Jim Ritchey, my ex-husband, the man I toured and played music with for twelve years of my life. Doesn’t everybody make sixteen-hour round trips for visits with their ex-spouse? They would if their ex was as kind and wonderful as Jim. Jim’s wife, Marsha, one of the most active, vibrant people I’ve ever known, had a series of strokes a year or so ago and now lives in a care facility. Marsha, trained as a dancer and movement specialist in theater, can barely move. She is remarkable. She has turned her energy to healing and has turned a once hectic life into one of contemplation and mediation. She is cheerful and all the folks at the facility love her. Jim and Marsha’s relationship has deepened through this experience. They are utterly devoted to each other. Marsha has made stillness her friend in much the way that you, Richard, have turned the infusion room into a place of smiles and anticipation, instead of fear and dread. This is magnificent, my friend. Every time I face something daunting these days (my taxes, an eight-hour drive alone tomorrow, loading gear for a gig in the rain) I think of you and the others in the infusion room. I think of Marsha. And you all keep me going. I’ll smile tomorrow as I drive and listen to audio books and music and enjoy the sunshine that the forecast promises. I’ll notice that spring is coming, that things change. I’ll take pleasure in my very easy and privileged life and I will feel so grateful to you for helping me realize how good things are.
ReplyDeleteThank you so much for your pictures, for your words, for your remarkable point of view.
Townes' "Greensboro Girl" !
ReplyDeleteI do love the recording of you & Jim playing in Dallas.
Wish I had the chance to do radio with Jim (while the board worked) - from all you've told me, his knowledge and perspective on music (and life) would have led to a singular conversation. And fine music!
Please give Marsha a hug from me. She is an inspiration. Grace and courage come from within, are earned qualities. She is a very special person.
Have a good road trip. Revel in the Spring. Sing to the sun.
You are special, too, BeJae. You touch the people in your life and enrich our lives with your warmth and wisdom. I'm very grateful you are my friend,
Love...
Richard