One thing that being a cancer patient does for you, is you get plenty of time to sit around and think - this is a double-edged sword - for me I seem to go through cycles of positive mental energy where I see opportunities for the future that I never saw before, and then I have times where all I can see is the darknesss, the pain and the futility of the battle.
What I am finding, this time around is that I am running out of people who care, people who want to listen, people who sympathy, most seem to just want me to shut-up and leave them alone.
It is VERY easy to get self-involved and to forget to look 'outside-yourself' as it were, to see that despite what I am going through, the world goes on, and, the world does not care. Live, die, cure, suffering, happiness, despair, beyond my personal bubble, none of it matters.
During this second phase of treatment (I started a regimen of Oxaliplatin and Xeloda three weeks ago), I have been healthy enough to return to work, to get back to somewhat of a normal routine around my home and with my family and then I realize that over the past four months nothing really has changed.
The problems and issues I faced before all this happened are the same ones I am facing now that I am here, except that now I have an additional mountain of bills that I cannot pay. Just for the depressing fun of it the other day, I calculated how much money it would take to get me 'even' back to the point where all I had to deal with were regular bills would be right around $25,000, $40,000 if you count paying back family who have helped us out over the past months and to help pay for my kids sophomore year at college... That's all, a measly $25,000.... Lottery? Publishers Clearing House? Yeah, with MY luck....sure.
Facing this and trying to come up with some kind of new plan for dealing with the economics of my life, which, I know, are not near as bad as many others, is only one challege I have. We still have our home, and our jobs, so it is not completely hopeless, I guess. I just calculate that I will have to work, full time, until I am like 83 or so...
Through all this mess there are relationships, and it is the relationships that, in addition to the medicine, that really make or break a successful course of treatment. Fortunately, I have renewed and strengthened some relationships, and others I have neglected, or let whither - to the point where I don't feel they can be resurrected.
As I sit in the treatment room and watch the Chemotherapy medication work into my veins, supposedly doing its' job. Drip ($50), drip ($50), drip ($50)... I sit there, thinking of my family, and all that MY condition has put THEM through. I will start with the easy and move on to the rough.
My oldest kid was away at college during my initial diagnosis, surgery and recovery. He is in his own world. He was able to come home during my hospital stay, since it paralleled his spring break - this helped my wife out, giving her a break from back and forth trips to Cleveland and with things back at home. But, in the bigger picture, he is on his own now. I am not sure what he exactly sees in me anymore, but he is inching ever closer to cutting the final strings from home and becoming his own man, the issues of his parents will rapidly be replaces by his own. I am the one seeming to struggle with this more than him... I miss my boy, sorry, it seems silly, but that is how it is.
Moving on to my youngest kid, he is just old enough to kind of understand what is going on with me. We have not had to hold too much back from him, he is 13 and is getting a forced baptism into the world of grown-up issues. From the time I have come home he has been very helpful, in fact his bed-side manner was wonderful. He dutifully fetched things to me when I was mostly bed-ridden, he has asked more questions about my new conditions (see some of my previous posts) and I think his interest in science has helped him understand a bit what I am going through. But, now that I am back to work, and it is summer, I feel terrible that I cannot spend more time with him. While my wife and I work, he sits at home, doing chores (mostly), watching too much TV, playing too many video games, and wasting away his summer.
While the chemo drips, I think about how many opportunities that my parents both gave, and insisted upon for us growing up - even though my parents often made less money than we did - yet we were always busy with parent-involved activities; little league, summer camps, scouting, etc. For us, our parental involvement consists mostly of haggling and arguing over chores and the watching of television shows that we mutually like... That is about it, and this much change. I only have about five or six years to really influence him and I hope, beyond all that I can change that and focus more on him and less on my issues.
Finally, I come to the toughest of all of the relationships, that with my wife. I want to state from the start that we have been married now nearly twenty three years, and been together nearly twenty six years and she has been with me all along the way. It has NOT been an easy journey for her. As noted this is my SECOND battle with cancer. She was there for the first, holding my hand and heart through that process. During that first time we also lost her step-mom to liver cancer and her mom developed breast cancer. I cannot imagine having three important people in your life affected by basically the same illness - cancer, and to experience the whole range of outcomes that the disease offers. Her step-mom fought liver cancer for two years before succumbing to it, her mom was able - through surgery and treatment - to fight off breast cancer, but eventually succumbed to complication of lymphoma. Then most recently her brother-in-law faced, fought and is till fighting Stage IV colon cancer, and then, I develop my second round of colon cancer. I am amazed daily that she has had the strength to deal with all this... on TOP of all the regular bumps and bruises that life throws at us. I really don't know how she has kept it together... It surely has not been with my help.
Not to go into all the details of a long-term relationship, suffice to say that being with someone for twenty plus years you get to know each other pretty well. This leads, I think to relationship-laziness - I am speaking on MY behalf now, not hers! Even before I got sick I can say I did not do as much as I could to make our lives better. I think I had been smacked with so many things during the last 10 years that I tended to neglect what should be the most important relationship in my life and. To be honest, we both suffer from the weight of continual economic issues. I think that like many people, it is hard to be happy when our lives are filled with living pay-check to pay-check. In many ways, we can't blame anyone but ourselves, we have not been the best of financial planners.
Beyond, the very real issues of economics, living with someone for so long makes it VERY easy to get into patterns. The same arguments, the same opinions, knowing the answer or opinion or comment your partner will have for nearly any situation, coming to the realization that you cannot change people to fit your picture of them. These kinds of realizations can either weaken or strengthen a relationships... For me, I think it is a mix of both. I think, though, if you ask my wife, I have been more of a 'challenge' than a 'comfort' - then add in the events of the last six months and I am surprised (and thankful) again, that she still manages to keep it together enough to help me through this, and to try to give me the space to deal with all these issues. I just hope that this process has not bruised our relationship any more than it can handle.
It has been hard for me to talk directly to her about my new condition - I feel that I have burdened her enough with all the transportation, time off of work to care for me, extra time at home dealing with me being bed and then home bound for three months. During this time she was left pretty much doing everything, from dishes to laundry, to paying bills (with one income and help from family), to trying to pay attention to the needs of our 7th grader AND keeping up with all her regular duties at her job. Again, simply amazing. I am not sure I have the same strength - were the tables turned.
Through all of this I am not sure I have done much to make things better. I think my personal frustrations keep coming out - I tend to lash out and yell too much at both her and my boys. I sometimes give off an attitude that I am SURE says, 'I don't give a crap about anything!'.
I don't know how else to get across my frustrations over this whole mess. A big part of my frustrations is that my days seem to be very polar... I seem to be either happy, energetic and enthused about things, or depressed, angry and convinced that there is not much of a future left.
Again, we come full-circle to the beginning. Things are bad, but they could be worse. I am not in control of my physical destiny, but if I follow the advice of my doctors, and make an effort to take care of myself -- physically, mentally and emotionally, it will allow me to live what I have left without causing anyone any more grief than I already have, and maybe along the way, allow a little more happiness to creep back into the darkness that seems to pervade my life - well, today at least...
