“The straw that broke the camels back”. Ever used that one? I love idioms, because in their quirky little ways they always evoke images that can be quite humorous if we took the time to really visualize them (check out: http://www.idiomsite.com/) . Have you ever visualized a piece of straw breaking a camel’s back?
I spent last week healing from my previous bout of chemotherapy, thankful that I didn’t have to have any more Adriamycin. The shriveled texture of my hands is starting to fade. This past week Dr. Patel sent me for a MUGA scan to make sure the ejection fraction of my heart is good (that it’s healthy). This is because we had talked about Herceptin, and Herceptin specifically targets cells that carry the HER-2 “code” on them. The cells of the inner heart carry the HER-2 gene, meaning that the Herceptin can damage the heart. Adriamycin also damages the heart. So, before I start Herceptin, which they say has no noticeable side effects, we had to make sure my heart’s still healthy. And it is- very. They say I have the heart of an athlete! Regardless of all the complications I’ve had to contend with, there is an upside to this whole mess, and that is that I am relatively healthy.
So, I go to Kern Radiology for this MUGA scan. They take a vial of blood, “tag it” with radioactive markers, and then inject it back into you as they take three 10 minute pictures of your heart. It’s that same damn machine they use for the bone scan. So I get there, and the first thing I contend with is this guy who has trouble finding my vein. Nothing unusual- that’s always a problem, and seems to be especially a problem for the Kern Rad folks. But, he finally finds the vein and draws the blood. I wait around, growing anxious about the test. Then, 30 minutes later, they’re ready to inject the garbage back into me. He’s got this fat needle that looks like it’s ready to do some damage. And of course, he misses the vein. But he doesn’t realize it until he injects a good portion of that tainted blood back into me (into my arm). And yes, it burns. So he hems and haws over it, and I remind him that I have a port. He says, “let me see it”, so I pull down my shirt and expose my chest, pointing to the port. He says, “oh that. I don’t know how to use that”. So he calls in a nurse. She has me lay on the scan table and she gets me with a small butterfly needle in a vein in my hand. No problems. So the remaining blood goes in and we start the scan. But by this time my arm is turning bright red and it burns. After the first 10 minute session, I mention it, and I get a “we’ll check it out”. But, the scan continues. Thirty minutes later and it’s swollen, and it hurts. “Oh”, they say, “we’ll get you an ice pack for that”. I looked at that nurse square in the eye and I said, “you know, I hate coming here more than I hate going for chemo”. She frowns and says, “you don’t really mean that, do you?” I said, “oh yes I do. This place gives me panic attacks, and nearly every time I come here you guys are injecting junk into my arms, missing my veins”. After a short banter back and forth, I tell her “thank you”, and proceed to leave. She says sadly, “well, I don’t think you really mean that”. She’s right. I was being polite. As I walked to my car, I had this vision in my mind’s eye of throwing a brick through the window of Kern Radiology. The straw that broke the camel’s back.
So the next day I go to VIPO (my local prosthetic shop). That place smells funny. But that bright and cheery lady who so freely lifted her shirt to show me her reconstructed breast, works there. And she always remembers me. So that makes it somewhat pleasant to visit. But my visit this time was not to pick out fake boobies, but to get a lymphedema sleeve. I don’t know if getting treatment for the first time in my new port, which now rests on my cancer side, or something else triggered it, but I officially have lymphedema now. Lymphedema occurs when lymph nodes have been removed and the body doesn’t have a system within which to drain the lymph fluid away. So it sits and collects. For the breast cancer patient who’s had a modified radical mastectomy, that translates to swelling of the hand, arm, and chest. And it can be painful. It can also be dangerous, as even a small invasion of bacteria can infect the stagnant fluid. I have this painful “knot” of fluid right near the inner bend of my elbow. I’m sure sitting on the computer, with my arm bent for hours at a time doesn’t help that. So from here on out, I have to be very careful with my right arm. One thing that helps the swelling is a compression sleeve. So that’s why I was there- to get a compression sleeve. My arm’s swollen, my hand is swollen, my port rests right near my armpit, my chest is still swollen from the radiation, and here she comes, the bright and cheery lady. The first thing she notices and asks about, is my prosthetic silicone breasts- all 10 pounds of them. She wanted to know why I wasn’t wearing them! Ya- it’s moments like that, when I can be in a room full of bright and cheery people, some of them even breast cancer survivors themselves, that I feel so totally alone.
But, that’s ok. I pick myself up, broken back and all, and keep going on. I have chemo scheduled in a few short days. I don’t have time to roll around on the floor crying about my broken back. It takes everything I have mentally, emotionally, physically, and spiritually, to get through this crap. So I successfully gear myself up for another cycle of chemo, getting all my ducks in a row at work (another funny idiom), in anticipation of being off a couple of days. I went in on Tuesday, and Al and I spent from 10am until 4pm at the cancer center. I also had an appointment with Dr. Patel that day. After the initial overwhelming lethargy from the Benadryl, I’m feeling as well as can be expected for someone being infused with poisons that are wreaking havoc on the cells of my body. One thing about chemo that has grown progressively difficult is the elimination of the chemicals. Having diapered three children, going through countless bouts of the flu with them, and having several animals that we love, I have gotten used to those nasty organically based odors that can permeate the nostrils. But that odor that permeates when I urinate the first two days after chemo is something I will never get used to. It isn’t organic. It’s chemical. And I’ve developed a psychological aversion to it that makes me nauseous even thinking about it. So I try not to. But maybe writing about it makes the experience less lonely? It is gross. And until you smell that smell coming out of your own body, I guess it’s hard to imagine. Anyway, chemo makes you tired. There’s a bone tired (I’m full of idioms today) that comes from low red blood cells counts, and then there’s just the more than average tired you get from having to expend so much emotional, psychological, and physical energy getting through the treatment. And it’s the latter that I always struggle with. Al’s Mom asked me the other day how I was doing, and I replied, “I’m tired”. She says, “from what, sitting at your desk all day?” Ya- it’s moments like that when I feel so totally alone. But I did get a laugh out of that one, and laughing is good for the body, even if it isn’t funny.
I got through the Taxol with no major problems. But, another poor guy who was in the treatment room was having treatment for the first time. He lifted his shirt to expose his large and recently scarred belly, where his port was placed. Several nurses tried to access the port, but were unable. As the man grunted and groaned his way through it, struggling with the indignity of it all I am sure, I was distinctly reminded of why treatment is so tiring. Even walking in the doors of the cancer center makes you tired. You see things. You hear things. You smell things. It’s a war zone in there. So, after the Benadryl wore off, the steroid high kicked in. I was so exhausted from the treatment, and yet I couldn’t even begin to feel tired. I’m up until 3:30am. By this time, it’s way too late to take any kind of sleeping aids and then be up in time to get the boys off to summer school. So, I force myself into the bed, and get about 3 hours sleep. Needless to say, that’s not enough sleep. So I woke up yesterday morning from my little nap, obviously starting the day with a heavy load. There’s no way I’m in any condition to even drive myself to work, much more assist needy clients throughout the day. I called in sick. Jared and Justin get off to summer school, Al’s at work, and Amanda and I both just do our thing around the house. Then Justin comes home, and Amanda immediately starts the conflict by telling me about every little thing Justin’s doing that he’s not supposed to do. One straw after another, and she doesn’t even try to gingerly place them. With each straw she places comes a slap of her hand on my back. And we’re counting them- one straw, two straws, three straws. So the load’s heavy, and I confront Justin about one thing in particular, and he and I have a go around. It’s so hard for him to say “I’m sorry” and move on with things. I’m really tired now. My back is bowing under the weight. Then Jared comes home. It’s more of the same- whining, crying, protesting, arguing. I try to remind them that I just had chemo yesterday, but their response is always the same. Justin says, “chemo isn’t nothing”. Amanda says, “ya, I know, but what about me?”, and Jared just says, “what’s for dinner, and can I go play?” The straw that broke the camels back. I think I was entitled to the little fit that sent me storming to my bedroom, door slamming behind me. I cried it out.
What is it that makes me feel so alone in these moments? I think a part of it is because I am alone. We are each on a road, and it’s one we walk alone. Of course, God is there with us, and has us alone on that road so that we can appreciate the fellowship with Him. But it’s still hard. Who doesn’t want empathy? Compassion? Connection? Al tries to be understanding, but for the most part, mostly what I hear from him is about how stressful work and school is. We each live in our own little worlds. Sometimes we penetrate one another’s world, and I always strive to make that more of a harmonious merging rather than a disastrous collision. But these days it hasn’t really worked out that way. And I have to wonder why. I can really play the martyr well- after all, I endure all this cancer treatment stuff for them. They are my reason to fight for life. And I guess I expect some sort of “thank you” for that, but I seem to be resented for it instead. Mom had chemo and isn’t feeling up to going to Magic Mountain. So they’re mad. But I don’t think they’re mad at me- they’re mad at my cancer. And I’m mad at it too. But we don’t connect. I think the bigger problem here is that my “strength” has a weak side. I get back up, broken back and all, and keep going on. I feel alone and I laugh off the absurdity. I feel like throwing a brick through a window and I’m polite about it. It’s not that I’m not being “real”. My “strength” if we want to call it that, is the real me. It’s that survival persona- that tiger spirit. It is who I am. So, what picture do people see of me? This cancer seems to have hardly touched me. I’m polite, I’m smiling, I’m even laughing. My skin tone is good. The puffiness in my face is gone. My eyes are gleaming. So, what does that mean? It means I’m “one tough lady”, as Dr. Patel reminded me once again. But, my strength has a weakness. It fends of empathy. It prevents people from connecting with me. It forgets about prayer. It gives people the impression that I will be ok. And I probably will be. But I don’t want to ever give the impression that this has been easy. I am still out to sea, still in the storm, still struggling to not inhale so much water that I drown.
My hair fell out, or is still in the process of falling out. Two weeks post Adriamycin, to the date, my 10 minute morning shower turned into a 45 minute shower. Each glide of my fingers through my hair resulted in wads of hair sticking to them. I mean, what do you do in that situation? Last time I had shaved my hair off in anticipation. I didn’t do that this time. I don’t know why- I guess I wanted the “full” trauma of it, just to say I had the experience? But really, what do you do? Do you shave your head in anticipation? Do you keep it, and just lose your hair to the shower drain and the pillow? Do you stop your shower and then shave it? What would you do? I took the longest shower I could, and then threw on a hat to keep the hair contained and hide the bald spots while I struggled to get through another 9 hour day at work. Then I came home, took another shower, and decided rather than struggle through it anymore, I’d just shave off what was left. I now have a constantly thinning stuble on my head. I saw a lady who obviously had a wig on at the cancer center the other day. I guess some people feel disgraced by the lack of hair on their head? I wore a baseball cap, and felt liberated to take it off as I was infused in the putrid colored chemo chair. I had to ask Edna, my nurse for this cycle, where those chairs come from. They’re nice homey recliners, but not the kind or color you’d ever really put in your home. There must be some company making money selling “chemotherapy recliners”? So, not having my hair isn’t bothering me. We’ve been this way before. It’s actually somewhat liberating, and I have a good excuse. The stares used to bother me. They don’t anymore. It’s my adolescent defiance finding it’s way back into my personality. I once had a t-shirt that had “what are you looking at dicknose” printed on it. If only I still had that shirt! I may never wear my prostheses. Who knows? And who really cares? Maybe I purposely won’t wear them just to make my defiant point? The straw that broke the camels back. Dr. Patel says that 3 months after I’ve completed all aspects of treatment (port out and off of the blood thinner too), I can start work on my tattoo.
My bones are starting to hurt. That, along with the rash, the mouth sores, the funky dented lines in my fingernails, and the numbness of the hands and feet, are the most prominent side effects of the Taxol. But, no more nausea. I’ve been real puffy the last few weeks too. I’ve gained 5 pounds. I take a diuretic, but that stops working after about the second day. So, by the end of the day my feet look like boiled Oscar Meyer’s. Oh well. Maybe by the next time I write I’ll be in a little better disposition? I think I need to go watch Madame Blueberry sing along in her starring role in Veggie Tales? Indeed, it never hurts to be reminded that a grateful heart is a happy heart, and to be able to laugh while being reminded of it!
Always in His Grace,