Friday, June 29, 2012
June sux- my summer sux so far
June...summertime...time to be with the kids by the pool going on vacation...just having fun. None of that has happened for me and it sux. I feel awful that I feel this way. People on Facebook are complaining that thier kids are fighting, they can't wait for their vacation, they are bored, they got rained on and it ruined their plans...the list goes on and on. Normally I would be right there with them...but this summer I am jealous that they get to complain about that, that they get to take a vacation, that they get to hang out by the pool.....that just isn't my summer this year and I am so envious that they have that!!! It is amazing how fast things can change your perspective!!!There are 30 days in June and out of those 30 days David has been at MD Anderson for 25 of them. That in itself is a shocking number to me. TWENTY FIVE DAYS.............25 days of not feeling well, of strep, pneumonia and fever. Twenty five days of antibiotics and other stuff being pumped into him. Twenty five days of having his family visiting him at the hospital. Twenty five days of sleeping in a hospital bed. Twenty five days of hospital food. Twenty five days of not being home!!! Out of those Twenty five days he has seen the kids twice!! That is another shocking number. A number that sux!! A number that just isn't fair. A number that is hard to explain to small kids. It just sux!! I try to busy myself with other things...I've tried to get back into running. But as I set some goals for myself (run a 5k in Sept., run 10 miles in October and my first half in January) things seem to gthe complicated.....David being put in the hospital, the heat/humidity at 6:45am is crazy! So I have to figure out how to start training when it is 95 degrees with the heat index!! I just can't give up on this!!! I've also figured out that if I focus on other people then it makes it easier for me. I always ask about my friends and whats going on and making sure they are ok. I always did this before, but I've made it a point to keep it up..even during difficult times for me. It helps keep me some.Hopefully we will get some news from the latest test and the dr can get David better so that July can be spent at home....with the kids....the 5 of us..a family!!!
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You probably know my daughter Devin is a cancer patient who was diagnosed with leukemia 2 1/2 years ago. She also had the same leukemia when she was 3 and went through another 2 1/2 years of treatment. In all, in her 19 years of life, she has been undergoing chemotherapy for over 25% of it.
ReplyDeleteWe met David because he was her teacher last year at Langham. Actually, she was undergoing treatment and couldn't attend school so he was more her "email" teacher. We actually met him when he volunteered to shave his head for Bald is Beautiful to help raise awareness for pediatric cancer, something very close to Devin and our family. We were really touched that he would do that and once we met him we really liked him personally, We have tried to keep track of what he's going through lately and are obviously very sorry that he not only has cancer but some of the issues he has had because of it.
Devin has one more cycle of chemo remaining, (5 rounds over 5 weeks)and then she will finally be done. Not counting all she got when she was little, in the last 2 1/2 years she's been in-patient over 25 times, anywhere from 5 to 40 days at a time. She's been in the ICU as a result of side effects 5 times, she's been in the ER more than a 15 times and I can't count how many gallons (literally) of poisonous chemo she's had pumped into her body (well over 100 doses of high dose chemo)and all of the nausea, sores, etc that comes with that.
I say all of that to let you know that we completely understand everything that you are saying here. We've lived it and we get it. You can't plan anything. Not only not a trip or weekend but sometimes not even a dinner. You get pulled in every direction and have to try and keep it all together while you're juggling everything...but most of all, you have to sit back and watch, knowing that there's nothing you can do other than be there to give a hug or wipe their face when they throw up. Just sit there and watch as the chemo tears down their body, just hoping that it works. That takes quite a toll.
We realized quickly that "normal" for us was just a whole lot different from everyone else. And that unless someone else actually lived through our lives they just couldn't understand. They tried, they worried, they were concerned and we appreciate all of it but they still could not comprehend because it is so much more than they think. We tell people what has happened or how things are going and they often tell us how terrible that sounds and how concerned they are but usually we've left out about 80% of the story. So in some ways, as a caregiver, you feel like, even though all your friends want to help and really do help, you are still a little bit on your own because you don't really have anyone who you can REALLY tell the whole story to and who can understand it. Someone who really knows what it's like to spend 3 or 4 days straight in the ICU watching your loved one and wondering if or when they are going to get better. Someone who knows how quickly everything can change from something as simple as a fever and that you have to drop everything and get to the ER because at that point, how quickly you get on antibiotics can be the difference between a 2 day hospital stay and a trip to the ICU. And worse than all of that...it's not one time. It's over and over and over.
But it does get better. David is winning his fight against the cancer. As long as you guys can keep his body basically free from all the "other" sicknesses out there while the chemo does it's thing then he will come out of this just fine and stronger than ever. As the time goes on, that gets easier and easier to do because what seemed abnormal will become normal. One of my daughter's favorite sayings is that you never know how strong you are until you have no choice, then it just "is". You don't even remember when it happened, it just did. And then before you know it, he's past it and life gets back to normal. And back to the way it was before this interruption. And when you are past it, you'll look back and won't even wonder how you did it. It'll just seem "normal".
ReplyDeleteAnyway, I have always thought that the cancer patient has no choice but to go through this but the caregiver does. And you are to be commended. You guys are in our prayers and we appreciate the thoughts and prayers from both of you for Devin. If you ever need anything, please feel free to ask.
Yes, David has told be about Devin. And it was no surprise to me that he would participate in the bald is beautiful campaign for her!
DeleteYes it's hard to be a caregiver and harder to explain to 3 kids and take care of them at the same time. I've really dumped them the month of June while taking care of things at the hospital. And now I'm shipping them off again since we are starting July with fever again. It's a never ending circle/rut that we are in.
Thank you for all of your kind words. It's nice to hear when some completely understands 100% of where I'm coming from.
I started this blog as a place to get out my feelings so I don't keep them in or take them out on his family. It's helping, but even on here....I'm only telling parts...because no one really wants to hear the whole raw and cruel truth of it all. And right now I think I'm in the anger part of my dealing with all of this....