I have given this quite a bit of thought over the past few days. I have concluded that I write mostly positively because overwhelmingly that is how I feel spiritually, and how I feel spiritually guides all other aspects of my life. Further, I try very hard to not complain because unless complaining about something specific can actually cause the situation to change, I don't see that it does much besides bring me down. Having cancer is not fun, it is not something I chose, there is nothing I can do to change it, and all I can do is hope and pray for the best. Complaining about any aspect of this will add nothing positive to the equation.
Considering all this further, I began to think about what I want to read when I go to someone's blog that I care about. I want to know how they are really doing, truly doing, and I am also there seeking specific information about how I might be able to help them or, in the case of the cancer blog world, I might be looking for specific information about how they handled a side effect or how a particular medication affected them. I have definitely not given enough detail about any of the particulars of my treatment to be of any help to anyone who is searching for that kind of information, that has been invaluable to me from other bloggers who let me know if a particular symptom I am experiencing is normal. There are other forums for that, more medical in nature, but I have also benefited much from us regular bloggers just being real.
Given this now rambling thought process (and most of mine are now, sadly) I thought I would share a bit more about my physical symptoms since going through whole brain radiation. Let's be clear, though, that this is more of a reference list than anything else. You may not be interested (actually I would be surprised if you were) but I have concluded that I do owe all those who have fought this fight before me and those who will fight it after me an accurate assessment of what it feels like to go through this, at least for me. So here we go...
This is, by far, the most difficult thing I have ever faced physically and mentally in my life. I had no idea how hard, even when my doctor told me how hard it would be, that it would be this hard. The fatigue and weakness I have been experiencing is so intense that it is easy for me to understand why people, in different situations than I am in of course, say they would rather just skip treatment and let nature take its course. That was something I could never have understood before but now I get it. Don't worry, I am nowhere close to embracing that point of view for myself, I just simply understand it. I have way too much to live for!
Most of my physical issues, it seems, are tied to the nasty steroids I have to take to keep my brain from swelling. Long term steroid use is just plain unpleasant. We are trying to wean down the steroids but it is a process, particularly since I have several symptoms that tell us the brain is not done swelling. If the brain swells too much it could cause the kind of damage that would render pointless the types of complaints I have about the steroids themselves, so I am trying to keep that in perspective. But it is difficult to do, some days more than others. They won't be able to scan the brain for another month or so, so we are just guessing based on the symptoms I'm having as to whether a wean down is a good idea or not. Being more of a precision gal myself, this is frustrating.
If you have not seen me recently, you would be completely shocked at the change in my physical appearance. I look like a chipmunk. I'm not kidding. My face is round as the moon with multiple chins for decoration. I have gained 25 pounds in 6 weeks, mostly in my torso. That is the most uncomfortable part for me because I have little that fits my new body shape, and because it happened so fast that my skin is stretched so tight I am afraid I will tear myself if I turn too fast. It is as if I suddenly have to carry a giant bag of dog food strapped to me everywhere I go. This makes stairs particularly difficult.
I have become quite inactive due to the fatigue which is at great odds with the weight gain as you might imagine. My knees and legs, in particular, have become so weak that at times they do not hold me up at all and I need to just wait for awhile until I can get up. There is a vicious cycle here that must be broken, but since the steroid I am on mimics blood sugar issues I cannot stop eating enough to make a meaningful difference in weight loss until the dose goes down, as I begin to shake so badly that I cannot hold a cup without spilling or dropping it. That kind of shaking is so disconcerting and awful and only food stops it, so what do you do? You eat because it is scary to shake like your blood sugar is in the 60s when it really isn't.
The oral medication I am taking for my brain tumors (which, by the way, seems to have brought my tumor markers to an all time low of 16, so we are cheering that good news) likes to decorate the skin. I have had two different rashes from that, one itchy and thankfully mostly gone now, and another resembling infected spider bites on my arms and legs. Attractive? No. But not painful or itchy, so I am glad about that. In addition, it has given me the most extensive and long lasting case of acne I have ever enjoyed and that's saying a lot from me who never really outgrew my pimples in the first place. But, hey, at least no wrinkles at age 40 thanks to the chipmunk face, so that's something!
Luckily, vanity is not ruling my life right now. Rather, the drive to live to see my children grow up trumps what I look like, but I would be lying if I said it was easy to watch myself turn into Quasimodo in the span of a few weeks.
The entire right side of my body is largely numb, particularly my hand (luckily I am left handed) which has made for some difficulties in things like fixing the girls hair, tying bows, etc. It is very disconcerting but the doctors seem to think it will resolve as the swelling goes down. I hope so.
I have had some unusual infections, as the the immune compromised seem to get, such as oral thrush (common for babies, not adults), UTIs, sinus infection, eye infections, etc. Nothing too big, but all together one thing after another. Currently all gone, happily, but I have to be very careful with germs and this is rather difficult in our house as you might imagine.
Today I could not get into my big red van to go to church. I had to have two people push me in because my legs have become so weak that I cannot climb up. I have learned to be careful to not end up flat on my back as I end up doing I need help balancing in getting from one place to another and really can only do or go one place in an entire day. It takes all day to prepare to get me out of the house and to that one thing, whatever it might be, so that takes some choosing and planning. I so miss being able to drive myself places and just hop out to get the one thing I need at the store. I have lost my independence completely and that is sometimes the hardest thing of all.
Mentally, I am sometimes clear and sometimes I cannot string three words together. I wish I knew what made the difference from day to day but instead I wait for a good day and then rush to do the things I have been waiting for clarity on. On a bad stay I tend to scare those around me with my non-sensical statements and occasional slurring, although usually I know what I am trying to say, I just can't spit it out. I also get weepy and more than a little compulsive and repetitive on those days. Some days all I can do is sleep and some I cannot sleep at all. It tends to confuse the body.
I always try to do too much immediately when I am feeling well because I am so desperate to be useful to my family and to take the burden off the people who are doing everything for me right now. I am trying to be better about this but I get so excited that I get downright hostile with whoever tries to step between me and whatever I am wanting to attempt to accomplish. Something else to work on. Sigh.
Another difficult part for me is the confusion that my once fairly tightly-run calendar is causing me. I can no longer wake up and know what is going on for my family on a particular day, and it takes me quite some time, if ever, to figure out who needs to be where with who when and with what equipment and snacks. Now, I acknowledge that this is a difficult thing to do for a mother of seven WITHOUT brain issues, but nonetheless it is another sign of my no longer normal life that figures into the equation. I am so very blessed to have my friends who have made this a non issue for me, as people arrive to pick up and drop off and they seem to be getting everywhere they need to be. How wonderful.
Last, but certainly not least for me, is that I am no longer singing at church. As many of you long-time readers of this blog know, cantoring and singing at my church was, outside of my family and friends, my greatest joy. Yesterday the choir resumed singing after summer break and for the first time in 6 years I was not in the choir loft. (I absolutely loved hearing them from the pews and cried happily through my favorite musical parts of the mass, but I couldn't help mourn not participating). I suppose I am like an athlete out for the season...I have new sympathy for those watching from the sidelines. At this point, I am really unable to sing not just because I can't stand up for long or get up the choir loft stairs easily, but even more because my voice isn't working right. The radiation affected my ears, throat and mouth (gums, tongue) and I don't have any breath control (possibly due to the extra weight, not sure). I am going to start singing again every day to try to exercise all of this, as I was so inspired by the choir yesterday, but I was also reminded of how much I miss this part of my life. Hoping for a turn around here.
So, folks, there you have it. A more "realistic" and thorough accounting of my situation. I hope this did not come off as a giant complaint because, believe me, I am truly not complaining. Every day I am here with my family, every day I can get myself out of bed, every day I can show up for SOMETHING is a good day. Yes, I really, really wish I never got cancer. I wish cancer did not exist in this world. But seeing as it does, and I did and I do...I've got my faith and my family and my community and that's all that matters at the end of the day anyway. There's nothing sugar coated about that, I promise.
And, hey, now that you know all the things that are wrong with me, I can now easily let you know as they go away one by one and you will know what I'm talking about!