DISCLAIMER: This is a rambling, disjointed, all-over-the-place post – but in my defense – it was written with little sleep behind me (for the past several nights, sleep has been very hard to come by) and this post was written between 3:00 and 3:30 am – so, read at your own risk
Well, today started out pretty miserably. After a night of very little sleep (I kept waking up every 1/2 hour or hour and then trying to get back to sleep and then waking up again) I simply was just exhausted when I got up this am. And, I was in pain. Pain is something that I guess I just don’t deal very well with as it really, really affects my mental attitude. It reminds me of the cancer, it makes me feel unwell and unhealthy and it makes me feel (after 10 months of treatment) that I am just not ever going to be better (which I rationally know is not true, but it is just the way it can make me feel).
If you have read previous posts, you may know that I have opted not to take anti-depressants (although pushed and pushed by several doctors to do so). Maybe it is a stupid decision, but for me, it is just not something I want to do. I have had to clear enough medications through this body and I don’t want to add another one to the mix.
And, besides, some days just stink. That is life, that is what makes the days that don’t stink – the wonderful days – so wonderful – isn’t it? I don’t know, like I said, I could be wrong. But, I just can’t see myself on antidepressants. I do understand the value of these drugs and the real need for people to take them. But, they are not for me, not yet anyway.
I guess it just seems like taking a drug to make me not depressed about something that would naturally cause depression seems stupid. Yes, I feel like my life has been hijacked by this disease, yes I have some days that are really awful and on those days I do not know how to reach out to anyone – which I have learned is about the worst thing you can do.
But, who wouldn’t be depressed by getting a cancer diagnosis, who wouldn’t be depressed some of the time during the treatment and recovery period and who would not sometimes be afraid. Why erase away (if in fact, antidepressants can even do this) or numb away or whatever away, valid feelings, fears and yes, some times the depression I feel?
Would I like to be happy every day? Of course. But, I don’t think that is realistic on drugs or off of drugs – with or without cancer, btw. Overall, I am and always have been a really happy person. And so maybe the dark days that I sometimes now have are more frightening to me, depressing to me because I have been so fortunate to have so few in my life time? I don’t know. But, I do know that I have been ill equipped to deal with the darker days. I tend to retreat and not answer my phone (sorry, I know it’s rude, but I don’t do well answering a call if I know or think I am simply going to cry).
So today was one of those bad days, wide awake at 3:30 am, alone, afraid, crying – yeah, I have those days sometimes (not a ton, but sometimes). And, then the day started – with or without my having any sleep
My dog needed to be walked, but, just the pull of her leash on a painful day is a bit much. And, I now had to also find a ride to my physical therapy appointment as my planned ride fell through (my planned driver was sick and I can’t really be around sick people right now, so I needed new transportation). Maybe it was the lack of sleep or just the pain, or both, but, these two simple tasks – walking my dog and trying to find a ride to my afternoon PT appointment seemed overwhelming.
And then I received emails and phone calls from friends and then, for one of the first times, I think, I was pretty honest about how low I was feeling. And, it was met with compassion, empathy, support, love, understanding and encouragement. And, well, it changed my entire day. So thank you to all of you who reached me today in one form or another (John N., Ann N., John S., David O., Mike A., Marv, Patrick, Sue). I don’t usually name people here, but I can’t tell you how much your contact meant to me today. Today had a real rough start to it and over the course of the day, things vastly improved thanks to the support I received.
I tend to be able to talk about the tough days after the fact, but rarely during the tough time. So today was a rare day where someone emailed me and instead of my saying that everything was okay, I let it out. And, it probably did not hurt in the least bit that this person just happens to have a Phd in psychology :). But, he is also my friend and his wife was like a second mom to me growing up. You know who you are and now you know how much you helped me today – both of you.
Also, I had a great evening with my Dad – he came out to take me to my physical therapy appointment (which went really well) and then we had an early dinner, watched a couple of Colbert Report episodes (taped, of course, so without commercials) and discussed music (and the new piano pieces I will start learning – some Bach two part inventions – Dad says they are pretty easy (hmmm, we’ll see) and I am excited about having something “easy” and new to work on. I need it to get my brain back. Seriously, one of the things that is recommended to deal with what they call “chemo brain” (it is kind of a fog that develops and eventually goes away) is to learn new things – the number one thing on the list was to learn to play the piano (or learn new music) or to do math (they are linked, you know) . Well, I’ll take music over math any day, so music it is.
I also ate a huge (huge for me) dinner. I have been really having a hard time with my appetite – as in I do not have one. So tonight I had a whole dinner – fish, vegetables, salad even a piece of corn bread and to top it off a piece of pie. That is more than I have eaten over the course of most days. So, it was a milestone of sorts. I know it sounds silly, but to be able to almost finish off a whole plate of food (okay, so I left a little behind) is huge – and pie?!! Well, that is something I haven’t consumed in nearly a year.
And, there have been so many dear friends on so many other occasions who have done amazing things for me – staying overnight with me during chemo weekends and after my surgery (Tiffany, Amber, Beth, my cousins – Jeff & Jeannine – you’ve all done so much for me), driving me to and from doctor’s appointments, chemo and Herceptin treatments (Tiffany, Carmella, Sandy, Dave, David O, Charles, Marv (who also took my dog for quite some time when I could not physically care for her), Jeff & Jeannine), grocery shopping, financial support too, and the support of my dear friends M & L (who have gone above and beyond, and, to my great fortune – happen to live blocks away from me) who sent their children (also my dear friends) to my home daily all last summer to walk my dog, to do chores, to keep me company and to simply brighten my day (they have raised and are raising wonderful human beings) and friends who have planned outings for me that were within my limits at the time – like the miniature golf afternoon three girlfriends took me on, and to Jennifer, Marissa & Shelby – your thoughtfulness from afar has been such a source of strength and to Dick & Shirley, Lindsay and Lindsay’s Mom, Drew & Hannah, Tony & Andrea (and Andrea’s Mom who crocheted two beautiful hats for me), Stacy and Terri, Gene L., Jim N., Michael , Jeannine’s mom Mae, and to people I have never even met, but learned of my cancer from a relative or friend of mine who have sent cards and more and my family – what can I say - I am so, so incredibly blessed to have my two brothers (Steve and Paul), my sister-in-law Marcella (Paul’s wife) my two wonderful nephews and niece, my cousins (Jeff & Jeannine – you have gone above and beyond), my Aunt Sally (an incredible woman, whom I love and adore), my wonderful Uncle Gene – a true gem and my AMAZING PARENTS, I would be lost without them. And, I can’t forget my band mates in our blues group – “Huge Blues” (I hope I am still in the group, but, I haven’t played with them since the summer – our last gig was at the Orange County Fair -it was a blast and yep, I played bald (why not) – I hope to return to playing soon – the physical therapy is really working and I am excited by that. I have so much to be thankful for.
And I KNOW that I have left out names – some intentionally because I am either not sure you are comfortable being named or because you have specifically asked me not to name you and some simply because it is after 3:30 am and I am onto my second night with little sleep (so please forgive me).
Well, so a very rough night (last night – Thursday night) and a very rough day (Friday) ended pretty well. It is amazing what a difference loved ones and friends can make. And, the physical therapy I am getting is so encouraging – it is painful at times – but it is so obvious that it will work. The down side – it is 30 dollars each visit and I am to go 3 times per week – phew – $90 a week, on top of $60 co-pays for specialists and $30 co-pays for non-specialists – it adds up pretty quick. And all of this when I am not working – but, I have sold a few books and I just received another order today (I just have to get on it and fill the order). So, it will all work out. And, I have had some generous friends, and of course my family, and I will also seek resources that are available for cancer patients.
But, it is amazing how little there is out there in the way of financial support to cancer patients – who truly can not work some times for months or much, much longer. You don’t think about these things until you are sick I guess, but having excellent insurance (which I do have) and having cancer is very expensive. Something when I am done with this treatment I am going to work to change is the availability of financial resources to cancer patients (among a few other things I have been keeping a running list of – let’s put that law degree to work, right?)
I am deeply committed to that – making very necessary changes. Legislation has to change and resources need to become more readily available to cancer patients. The Susan G. Komen Foundation is amazing – they have raised millions and millions of dollars for cancer research – I am so grateful they exist. But there is little money available to cancer patients who are unable to work during treatments.
Fortunately, there is a great deal of money for research – especially for breast cancer research (and I am benefitting from this very much). But, the costs financially for the cancer patient are so high and there is so much money raised by Susan G. Komen – for example – but it is virtually all for research – and it is appropriate as they are “racing for a cure”. But, there is very little to help existing cancer patients who can not afford to pay co-pays or simply make their rent or mortgage. So, if money can be raised for a cure, it can certainly be raised for financial assistance to cancer patients during treatment and recovery.
And, God forbid you should not have insurance. I could go on and on here – but won’t this am. But, I do intend to fix some things that need some serious fixing as soon as I am physically able to do so.
Well, I am sure this post is pretty disjointed – I think I will go back up to the top and add a “disjointed post” disclaimer. It is nearly 3:30 am and I have yet to go to sleep. But, I will soon, hopefully. I had to increase a dose of medication tonight (so my Dad is here staying with me just in case) one of the side effects is insomnia (another possibility is drowsiness – well, I definitely did not get drowsy). I feel like I have had way too much caffeine or something. So, that means it will probably make more sense to take the drug in the mornings. We shall see.
Alright, I am calling it a night/morning or whatever.
Thank you, everyone, for your continued prayers, support and positive thoughts you send my way. I greatly appreciate it.