|Photo by William Warby.|
I recently read a blogging challenge to blog “A to Z” through the month of April. A few days later, an old friend and blog follower contacted me by email to make sure I was still alive. It was kind of rotten of me to announce my cancer recurrence and surgery, then fall off the face of the earth! So, with those two moments aligning, I’ve decided to take the challenge.
I’m a writer and I know I should be writing, but it’s been a rough year. It is very difficult to find the time – my plan, actually, to meet this challenge is to get up an hour earlier, which is going to mean less sleep when I really need more. There is also, too, the issue of writing helping me to process stress. Writing is absolutely therapy to me and, like therapy, part of the process sucks. When dealing with the worst problems, you go through hell and break things apart to put them back together again. I have not had the time or energy to bother. Truly.
My focus has been on staying alive and keeping my daughter’s life as normal as possible. That’s it. I haven’t been worried about cleaning the house, mowing the lawn, having a social life or eating right. You can keep your politics and world events. Save your personal drama. And if you have life events that are just as traumatic as mine have been? I am so very, very sorry, but my ability to register these things has been severely compromised.
My life has been this: get out of bed, get the kid to school (hopefully with a lunch or with money in the lunch account), work, make sure the kid gets home safely, fix dinner, make sure the kid does homework and/or get her home from her dad’s, make sure the kid takes a shower, tuck the kid in bed, go to bed. Rinse. Repeat.
Here is a recap of the last year with more or less accurate dates:
- April 2011: increasing back pain. I was also monitoring a lump with pain in my armpit.
- May 2011: back pain immobilizes me. Lots of tests. Lots of missed work time. Hemorrhaging money. Docs finally decide anything they have identified with my back should not be causing this much pain. More tests. Finally decide it is my gall bladder. No damn doctor in town to operate. Finally find someone in the greater metropolitan area who is actually working, but have to get on the schedule.
- June 2011: Gall bladder removed. Feel somewhat better in a few days, although the back is still definitely part of the problem. (And as of April 1, 2012, still in pain.)
- Mid-June: Biopsied the armpit lump. It’s cancer.
- July 2011: Lymph node dissection. My 9th surgery and the most painful surgery ever. I did NOT get back to work as fast as I had planned. And when I did get back to work, I was in terrible pain. Out of paid time off at this point, so any day I take off work is unpaid. Money situation gets desperate. My aunt (who lived with my parents for the last almost 10 years) dies just before my surgery. With everything going on, it takes a while to sink in. I miss her and her wisdom desperately. She was only 10 years older than my mom, but I feel like I lost a grandma.
- August 2011: Something is not right with the surgery site and ultimately realize I have a terrible infection. It drags down my recovery, causing incredible fatigue, fever and more pain. The antibiotics are difficult. The infection must heal completely before I can start radiation. I start Lupron – an ovarian suppression drug. Must strip myself of all things woman, as they are all killing me. I cry a lot because I still want to have babies and I know it’s over at this point. Have to be dragged to get the shot. There are incredible bright points in friends bringing food, cleaning for me, mowing my lawn and even an extremely generous monetary gift by an anonymous benefactor! I am utterly grateful, yet I feel like all of the help in the world would barely scratch the surface at this point. I concentrate on putting one foot in front of the other.
- September 2011: Although the infection is not completely healed, I’m finally deemed healthy enough to start radiation, which I do later in the month. Daily. On one level, it’s not very hard – you don’t get sick like chemo. The fatigue takes weeks to build up. I won’t lose my hair. You simply lie still for 15 minutes. That’s the downside. You lie still for 15 minutes and think of cancer. It’s like a daily dose of a psychological beat-down. And you can’t cry because then you get yelled at for moving, which isn’t allowed. I burn immediately.
- October 2011: Daily radiation continues. Fatigue is starting to get to me. By the time radiation ends in late October, I have a crushing headache that can’t be diagnosed. Doctor decides it might be stress and radiation fatigue and tells me to take some time off work. I had been working as much as possible, trying to avoid living in my car. So many wolves at the door. But the headache is making it impossible anyway, so I take her advice. After a day of rest, the headache is dramatically better. A few more days and it is gone. I go back to work and it comes back. Nice. One foot in front of the other.
- November 2011*: Burn gets really bad, although I now know I have nothing to complain about. It eventually healed nicely, but, fuck, it hurt for a few weeks there. In mid-November, I have my ovaries removed. Fatigue continues to get worse. I’m sleeping more than I am awake. My life has completely fallen apart, but I have no energy to care. Any energy I have has to go to working – and even then, I can’t manage 40 hours a week. I have to stop paying the mortgage because I have missed too much work and just do not have enough money. I’m relying on others to take care of my daughter.
- December 2011: *Driven by need and a long-term desire for a specific career change, I accepted a new position at my job in October and it started in late November. Insane, right? I am barely able to manage the required 40 hours a week, but I do it out of necessity and panic. There is nothing like fear to motivate! I am notified of an insurance change in late December and must choose between a high deductible plan, which will cover my expenses at 100% after $5,000 or a plan which has a lower deductible ($2,000, I think) and only covers things at 60 or 70% (I forget). Either way it sucks. I do the math over and over and over. I’m screwed. Upon the advice of friends that this soon after a recurrence, the likelihood of me needing surgery or further treatment in the coming year is extremely high, I go with the HD plan, even though my cancer drug is going to cost $250. I contact the drug company and get on a program where I can get it for $40. (Only, as it turns out, I don’t qualify and will end up getting it for $150.)
- January 2011: I have developed a method of monitoring my progress – I think back to how I was feeling one month ago and gauge the difference. In December, I felt better than November. I now feel better than December … until mid-January, when I start waking up every hour to 45 minutes, have incredible fatigue, develop facial twitches and horrible short-term memory loss. Do I have a brain tumor?
- February 2011: I forget to take my anti-cancer drug for two days. I realize after I take it again that I slept better those two nights. I go off for a week and by the end of the week, the symptoms are almost completely gone. Call doctor. Get prescription for a new drug – but I can’t afford it. $279 on the HD insurance. Call pharmacy company. Apply for assistance. Don’t get it. Spend five weeks off medication because I can’t afford it. Doc’s office finally switches me to a third drug (Femara) and sends me home with a free three-month supply. (April 2012: still no idea how much it’s going to cost me, but I’m betting whatever it is will be too much.)
- March 2011: I’m living on a thin margin. Too thin. I’ve been able to maintain 40 hours a week at work, which makes me feel like a rock star. But it’s not enough. I haven’t managed to pay the mortgage since October. New job requires more driving. Rising gas prices are killing me. (I cringe when I go to the grocery store. I worry about a day when I have to choose between buying groceries or gas.) Car requires as much oil as it does gas. Gas and oil are more than my raise. The car blows up in February. We are subsisting on Andy’s borrowed vehicle and one week later, it dies. I have to rent a car. I have to buy an engine for my car. We spend a lot of time creatively planning vehicle sharing.
- April 1, 2012: It’s no joke – I got a foreclosure notice yesterday. While I figured it was coming, I definitely feel like I’ve cracked. Spend many hours crying. I might be able to get a modification, but that depends on other people. Even if I do get the modification, my minimum expenses still have me on a tight budget. When gas jumps up 30-50 cents, it breaks me. I have no idea what Femara costs and that also may be my undoing. I can’t file bankruptcy unless I catch up the house payments or choose to include the house, which means I must move. And since my mortgage is less than rent here, that means moving away. In June, my daughter will have open heart surgery. Despite months of trying to figure it out, I can’t allow myself to consider moving my child from her home and school after all she has been through and all she is about to go through. She is so awesome and resilient. I love her and she is my whole world. I just want to give her a little tiny corner of “normal.”
So, that’s my year. That probably gives you several good reasons why I haven’t been blogging.
Overall, I have not been having a lot of depression. Sure, it has been there at times. When the fatigue was at its worst, I was really depressed. When the infection wouldn’t heal, I thought I was going to die. But for the most part, I’ve been really focused on just living one day at a time. For the most part, I laugh and smile and I feel ok. I love my daughter. I love my boyfriend. I really, really like my new job. I am generally excited about my garden, although I get a little down when my body won’t cooperate with what my mind wants it to do. But right now, trying to figure out how to save my home and make ends meet, trying not to allow stress to get to me (because as I know from many cancer conferences, stress is probably the biggest “risk” factor I have in my life) and to stay healthy and keep my daughter healthy, it’s more than I have the emotional capacity to handle.
There have certainly been good things, too. In fact, many, many good things! I really do love my job and despite the obstacles, I do think it was a very smart thing for me to do. I am feeling better physically all of the time. The new drug is not yet showing signs of the side effects I was having with the other one. If I can afford it, this will end up being a very good change. My daughter is blowing me away with her grace under pressure and I’m taking all kinds of lessons from her example. She continues to get smarter and more and more artistic. It is inspiring to see her grow up.
I’ve been making a concerted effort to manage my weight in the past month and it’s working. I also feel better because I’m eating my veggies. I had a friend help me re-find an excellent mechanic whom I adore and he has replaced my engine. (Thankfully, my tax return covered car repairs. Unthankfully, that money was going to go to the mortgage company. I actually had to choose between a car or foreclosure. Car won. I have to have a car to get to work so I can make money to buy groceries.) My car runs really well now and I am more relaxed knowing if I do have problems, I know where to find a good and honest mechanic. As any car owner knows, that’s a major triumph.
My emotional coping skills are far better with this go-round of cancer than they were six years ago. I think I’ve done a fantastic job of handling everything as well as I could. I constantly struggle in my “routine” life to manage my expectations, but I’ve done a very good job of that this year and I’ve only occasionally been hard on myself (rather that the daily way I’m generally hard on myself). I am very hopeful about my health. I’m usually hopeful about my future. The deal with my house makes that very hard but, honestly, out of everything I’ve been through this year, it is the only thing that has really stomped on my hopefulness. I think that’s extraordinary!
A year to forget? In some ways, yes. But as I’ve learned, life is a continuous series of challenges. I can either choose to see those as unending struggles or just part of the rhythm of life. I have to keep reminding myself to take it one day at a time. When I do that, it’s all so much easier.