The Monetary Cost
Cancer is expensive. I have good health insurance. Really good health insurance. Even with very good health insurance, though, cancer is expensive. Every time I visit my primary care doctor, which is about every four months, I have a $10 copay. No big deal. Every time I visit my oncologist, which is every six weeks (down from every three weeks while I was undergoing chemo), I have a $15 copay. Every time I have treatment (Herceptin and Perjeta infusions), which is every three weeks, I have a $30 copay. In addition to these routine things, I see my cardiologist, my surgeon, my gynecologist, my ophthalmologist, and my oncology rehab specialist periodically. That's $15 each visit for each specialist. On top of these copays, there are other medical costs. Luckily, for my Tamoxifen prescription, I am able to receive a 90 day supply, which is no cost to me. My other prescriptions, however, are between $10-$20 each month. Then there are the physical therapy appointments. Yep, $15 per visit. Since my surgery a year and a half ago, I've visited my occupational therapist and my physical therapist for three different problems. Each time, I went twice per week for four to eight weeks. Then there are the myriad other things we need to buy that we never thought about before. The cane. The mastectomy bathing suit and swim form that is not covered by insurance. The gas for our van that takes me to Georgetown at least every three weeks. The medic alert bracelet. The handicapped tag fee. The handicapped bars for the shower at home. The dental fees. Chemo takes a toll on your body. There are long lasting effects. It really messed up my teeth. You've probably heard it before, because I've been procrastinating having the work done. Partially because I can't yet afford it, and partially because it scares the hell out of me. Long story short, I have to have the four bottom teeth pulled and a permanent bridge inserted. This is in addition to some cavities and four root canals that should be done. Many of my family and friends have contributed to my dental fund, and I have sold some hand-knit items to add to it. I still have quite a ways to go, though. I am keeping the dental fund money in a separate account so that I am not tempted to spend it. I think I will have to get it done in steps, as the money is raised, as it is difficult for me to eat now. Those front four teeth are sensitive, and they hurt. I can’t bite into even a sandwich now. Which leads me to another way cancer costs:
The Physical Cost
You read above about my dental woes. My teeth are pretty much destroyed. My fingernails, too. They used to be long. No more. I thought that would remedy with time, after chemo ended. Not so. As soon as my fingernails start growing, showing the white part, they peel, crack, become jagged. I tried a nail strengthening treatment, but it didn't work. After two weeks, the gel polish is peeling off. Maybe if I do it consistently, it might have an effect over time. Maybe. But, it is an extravagance that I really can’t afford to keep up with.
Fatigue -- I’m tired all the time now. Physically exhausted constantly. Too tired to do the housework I used to do. My husband and sons have taken up my slack. At work, I don’t walk around as much as I used to. I’ve had to ask for my hallway duties to be changed. I lose my balance when I walk. I realized one day that I had been walking near walls, always looking for something to catch myself with should I stumble. I avoid stairs as much as possible, as I am very afraid of losing my balance on the way down. Most of the time this is easy to do, but sometimes it's difficult. For instance, the day the fire alarm went off at work. I work on the second floor. Usually when a fire drill is scheduled I make sure I'm downstairs before it's called so I don't have to use the stairs. This day, though, it was not a drill, and was unexpected. I stood at the top of the stairs for a few minutes, alone, contemplating going down, trying to work up my courage to do so. I had no choice, so off I (slowly) went. Two people walked past me. Two people, coworkers, not students, who didn't acknowledge me, or offer to help a woman struggling down the stairs with a cane. Yes, I could have asked for help … but my mind was too preoccupied with concentrating on getting down each step, one at a time. That's another story, though. I do have a lot to say about what that says about our society in general.
So, I use a cane now. My physical therapist thinks that my balance issues are fatigue driven. Fatigue is a side effect of Tamoxifen, which I take daily. I am working on building up my stamina with a recumbent bike, and I will begin taking water fitness classes as soon as I buy a mastectomy bathing suit. I can’t really go to a public pool with just one boob now, can I? J
Which leaves me with the biggest physical cost. The breast amputation. The correct term is a mastectomy. I had a left modified radical mastectomy with lymph node dissection. I like to call it what it is, though. They cut my boob off, plain and simple. My surgeon and my oncologist discussed it, and decided it would be in my best interest to not have reconstruction. It would have delayed my maintenance treatment, and that is more important. After hearing some not so nice stories about reconstructions gone wrong, I am happy with the decision. It’s been an adjustment, so say the least. I used to say, “Is this somewhere I have to wear a bra?” Now, I say, “Is this somewhere I have to wear the fake boob?” You get the picture.
The Emotional Cost
Most of my family and friends have been absolutely wonderful. Incredibly supportive. Not only while I was undergoing chemo and surgery, but even now, two years later. I think people understand that this is not a treatment-recovery-done kind of thing. This will be ongoing, for the rest of my life. The treatment that I'm on will be forever, or until it stops working and we try something else, or it stops working and I enter Hospice.
On the other hand, some of my family and friends treat me differently now. I don’t know – I wonder if they thought it was going to be a treatment-recovery-done kind of thing, and are resentful of me because it’s not? Do they think it was and I’m milking it, somehow taking advantage? Some who used to come over often don’t come over at all anymore. When I’m at an event, I am studiously ignored by people who used to talk to me often. I will never forget the night of my son’s confirmation. I was sitting in the vestibule of the church, scarf on my head, waiting for him and his dad to come out. A woman who I thought was my friend walked past me with the event program held up to her face. That is an image that will stay with me forever. I was crushed. Before cancer, we would have greeted each other, asked about the boys (her son was being confirmed, too; the boys had been in playgroup together as toddlers). Aside from friends who treat me differently, some family does, too. They might not think I notice. They might not notice themselves. But I notice. My children notice. That’s what bothers me the most. That my children see it.
Other than people treating me differently, I guess you could say I treat me differently, too. My perspective on things changed. When I was first diagnosed with cancer, I thought I didn’t have much time left. Seriously, it’s Stage IV cancer. In my mind I went to the funeral home to pick out my casket (it’s blue, by the way). The grim reaper is knocking on my door. I was overcome with grief. My doctor, thankfully, prescribed an anti-anxiety. She also suggested that I see a therapist, which I did. My therapist talked me down from the ledge. She taught me about guided meditation and recommended some good youtube channels. My husband was instrumental in talking me down from the ledge, too. He and my sons (and let’s not forget our dog) have been such a support.
I am no longer thinking I’m going to die anytime soon, but it’s always there, in my mind. Although I have hope for a long life, I do have to face the reality that it could change at any time. I am a member of a few stage four support groups on facebook. It’s not unusual to see someone who had been so active with advocating and supporting other members suddenly disappear. Sometimes we hear from their families that they’ve entered hospice, or that they’ve died. I’ve seen that when the downturn starts, it doesn’t take long. Strong women, active women, alive women, suddenly aren’t vibrant anymore; suddenly aren’t alive anymore. When it happens, it happens fast. That scares the hell out of me.
Let me end by saying that, although there is a big emotional cost, there is also a huge emotional reward. I’m not saying cancer is a gift, please don’t get me wrong … it is nowhere near a gift. The emotional reward is in the form of friends I haven’t seen in years (we’re talking up to 30 years here) have come to visit. The cards in the mail. The thoughtfulness. Just yesterday I received a Wonder Woman magnet and small poster from a friend. The texts, the facebook messages. My boys. My wonderful husband, two sons, and dog. Such love. It’s pleasantly overwhelming. So, although there is a high cost to cancer (monetarily, physically, and emotionally), there is the overwhelming support I have received. That is worth much more than money.