For a little over six years now, I have been hating Multiple Myeloma. Not only for all the trouble and pain that its caused, but also the daily wear and tear on what was once, a normal family life. I'm not sure why, but I used to feel guilty for that hatred, I think that's because hate is an emotion that I rarely choose to try and feel. I know what it is to truly feel hatred, but I have accepted and learned that it's ok to feel this way towards Phil's disease. And my guilt for that hatred still exists, but now only when I choose to feel it.
But there was a period of time in my new life with this disease, during the last six years, that I found myself trying to be everything to everyone. I was so stressed, I was in my last year of college, both of my girls were teen-agers and definately 'at that age', and the financial aspect of Phil's first major surgery (with him not being able to work for 8 months) was really starting to take it's toll. It caused me to break down, I wasn't in control of my guilt, my life, or several of my other emotions and feelings at that time, and I ended up shutting out the people that I love, and the people that love me the most.
I now know what it's like to be a full-time care giver, which can consist of, but is not limited to, weekly appointments (an hour there and an hour back), bi-weekly visits to the pharmacist (40 minutes there and 40 minutes back), several phone calls to the pharmacist and doctors throughout the week, portioning out all the meds that it takes to fill his weekly medications boxes (yes, boxes), paper work, saving receipts, scheduling appointments, et cetera. And all that comes along with the full-time schedule of trying to be the best mother to my two daughters that I can be, including being a good listener and coach, working my job outside the home, taking care of the yard work, the house work, the cooking, dishes, and laundry, plus all the other normal daily chores that it takes to keep a household running.
So guess what? I have learned that it's ok to accept help, to fall and get up, to try, fail, and try harder the next time, and most importantly, I've learned that it's okay if I'm not the strongest one all of the time. I dont have to put all the pressure of our problems on my shoulders and carry the load until everything is taken care of. I've forgotten that I can deal with these issues one-at-a-time. But sometimes, like in the beginning of this whole Myeloma ordeal, my life can seem to be so overwhelming that I forget how to prioritize things, and then it's not long until I'm feeling like I'm in over my head again.
Now, I love my husband more than life itself, and I would not change the care I give to him, or the life that we share. He is my rock, my shield, and my fortress. He is my everything, and I love him more today than yesterday. So when I got aggravated this week due to a Myeloma related issue, I just dealt with it, and as always, worked hard until it was a done deal. And I usually just handle these things and move on without any acknowledgement what-so-ever, but this time was different. I was almost finished with the last part of the latest issue, and thats when it happened. I got 'the question'.
And that question is "So how is he doing"? I realize that most people that know us, and know of our situation, are usually just asking to be polite. So I give them a quick "He's fine, everything is going along just fine". This is an easy way out for me, if I dont feel like talking about it, but it's usually the best way out for them, because I can usually tell when someone doesn't really want to hear all the sordid details of Phil's latest round of appointments, MRI's, bone scans, radiations, surgeries, and so on. But sometimes I get so aggravated with them for asking 'the question', that it makes me angry. Only when I know that they really dont want to hear the honest 'answer'. Don't they get it? Don't they fully understand all that we have been through, and all that we deal with on a daily basis? Dont they realize what this cancer has done to us? Not only emotionally, but financially, and in so many other ways? What it has taken from us, and our two girls? The wonderful lives that it has ruined? The pain and devistation it has caused? That having a 'terminal cancer' means that Phil will eventually die from it? And that it's still, always, and slowly killing the man that I love right before my eyes. Sometimes, in that anger, I'm sure that they don't get it, and I feel like we're left to deal with this disease all alone. Sure, they ask 'the question', but angry or not, I know they dont want me to give them the 'real answer'.
Sunday night, as I was leaving an exhausting 13.5 hour day of work, I said under my breath "I hate this place sometimes, and I'm just glad to be going home." Now for the record I don't hate my job, I was just exhausted. Another co-worker of mine that was close enough to hear me replied "your only a weekender, you don't even really work that much." Now she knows Phil has cancer, and she knows our situation. However she, like many, see the disease as what I refer to as an "invisible myeloma". So I then said to her "But you forget that I'm here (I work at the same hospital that Phil sees all his doctors) with Phil for all his cancer related appointments and stuff, all throughout the week". So then she say's, "But that's not REAL work"! And starts laughing. "I'm here three or four days a week, actually working". I was crushed, and I felt all my emotions drop down into the pit of my stomach. And since then, I've thought a lot about that conversation. I feel like a lot of people feel that same way about Phil & I. Approx. 3 1/2 to 4 years ago, right before Phil's second major surgury, we were consulting with Phil's Doctors and the hospital's Social Worker. It's then that we learned that this prcoedure was going to leave him disabled. As Phil was explaining this to a group of his co-workers the next day, one guy actually said, "I'd love to be on disability, you get to stay home all day"! This guy then told Phil how jealous he was of him because Phil no longer had to go to work. Now that is the stuff that Phil and I can usually laugh about, but I know that deep down, it sometimes still hurts the both of us.
You may wonder what I meant when I said "invisible myeloma" earlier in this blog, and I'm about to let you know. When you look at Phil, he still has most of his hair, and can still present a "healthy" appearance. And on the days when he's feeling good enough to go out, he even appears to be walking fine. And it's also on these days that we often get the glare from people walking by when we get out of the car in our handicapped parking spot. They don't see the disease at work on his bones, or the nerve endings processing every ounce of pain where there's a "cancer spot". They don't see or know about the dead bone in his hips or shoulders that causes the creaking, cracking, and grinding of bone on bone at times. They dont see the scars of the surgeries that he's had, or know about the pins, screws, and other 'surgical implants' that are keeping his spine in place, and (thank God) were implanted to help him keep walking. They dont know that on the inside of him is an ugly disease that causes more pain than your average man could tolerate, and I would even venture to say it that would make a grown man cry.
Don't get me wrong, I am very grateful for the few solid people in our lives that have reached out by sending a card, or an email of geniune concern, or friends who have offered their service to run to the grocery store, supported us, and who really care. The sacrafice that those individuals have made is priceless, and thank you just doesn't seem enough. And it's that dose of geniune love that helps us over the hump of discouragement, anger, and stress of dealing with a terminal cancer. It is instrumental in the will to keep fighting the fight, or just getting us through another day. It's an unmeasureable amount of support and love, when sometimes I feel like I'm the only one helping him fight the fight. Even Phil, gets down when no one else seems to care. Thank you for all of you who have pushed, pulled, and yanked us over the hump, prayed for us, and helped us in all the ways that you have.
For those of you who don't take the time for a loved one with cancer, shame on you. I hope you never have to be a caregiver to a cancer patient or become a cancer patient yourself. At any moment in life you could need the same encouragement. Your life could jump into the turmoil of dealing with an incurable disease, and your security in your bank account, job, and health can be ripped out from under your feet. I am angry at some who should care more now than ever about Phil, make a 5 minute call of encouragement, send a text, or email him to show him your suppot. He is a strong warrior fighting an ugly cancer, and in my eyes he deserves a Gold Medal of Honor. Life is hard but having cancer makes life a daily struggle. So please continue to show that to anyone who is dealing with cancer, we may not always show the appreciation, and love but we really do thank you. And if your the one who is not reaching out, but should, search your heart and find it within you to show how much you "really" do care.
