I decided to cave and go on insulin. I was so miserable not eating anything that I just had to suck it up and do the stupid insulin shots. Part of the reason I didn't want to do insulin is that in the past I've had to give myself shots at home of these drugs called Neupogen and Epogen, which are growth factors for that special type of white blood cell called the neutrophil and red blood cells respectively. You have to use a big honking needle for those things. Well, there are bigger needles, but those needles are pretty big, they hurt, and the injection itself stings. The insulin needle is this teeny tiny little baby thing that you can barely feel going in, so the injection itself is really not a big deal and I feel kind of silly for resisting and being miserable for a week longer than I needed to be. The improvement in my mood and outlook from being able to EAT again was immediate and I have been treating myself to some sweets - in moderation, of course. You can see my assortment of ice cream goodies - moose tracks and bumpy cake flavored ice cream with Sander's hot fudge. Is there anything better? My mood was also lifted by having a good visit with my doctor on Tuesday who thinks I'm doing "awesome."
Remember how I got the mylotarg last week? Mylotarg causes your blood counts to drop. I haven't been sharing my blood counts because they've been totally normal since my transplant, which is rare, most people have low counts for months after transplant. On Tuesday they were lower but still okay. Then I went in on Friday for a blood draw and my neutrophils, the first line defenders against infection, were 0, and my overall white count was 0.5. These are transplant-level numbers - very, very low and putting me at a huge risk for infection. So what did my doctor prescribe for me? Neupogen shots to raise my neutrophil count!!!!!
Here are the insulin and neupogen needles side by side. Notice the difference in the length and thickness of the needles:
Now I'm giving myself 2-5 injections a day total. Great.
I know this is just temporary, but I've been feeding myself that line for the past five and a half years now. Chemo is only temporary. Being bald is only temporary. Vomiting five times a day is only temporary. Feeling like crap is only temporary. Self-injections are only temporary. Being exhausted all the time is only temporary. Taking a gazillion medications a day is only temporary. Taking steroids is only temporary. 'Roid rage is only temporary. Feeling insane from steroids is only temporary. Not being able to sleep because of steroids is only temporary. Losing my hair from steroids is only temporary. Being fat from steroids is only temporary. Skin GVHD is only temporary. Putting on skin GVHD lotion twice a day is only temporary. Gut GVHD is only temporary. Drinking disgusting liquids for diagnostic tests is only temporary. Home infusions of magnesium are only temporary. Not being able to leave the house is only temporary. Not being able to see people is only temporary. Not being able to eat is only temporary. Being bored all the time is only temporary. Here's a question: When is it going to get BETTER?
Then a little bit of guilt kicks in. I know there are patients who are far sicker than I am, there was a huge earthquake in Haiti, so many people have lost their jobs and homes in the recession. My life could be worse. But really, how far can you get by telling yourself all the time "it could be worse." I want it to be good now! I am sick and tired of being sick. I've been dealing with this for YEARS people. It was easier the first couple of times around. I was younger and still very dependent on my parents, I had had fewer life experiences. This time around I've been very independent and living in a foreign country on my own terms for the past two years. If I wanted to go to Paris for the day or eat cake for dinner or blow my whole paycheck on clothes or go on a weekend getaway I could and no one could tell me no. Now my entire life is circumscribed by treatment and illness. I spend the majority of my day taking pills, giving myself injections, giving myself a 2 hour long infusion, checking myself for GVHD, putting on steroid creams to treat the GVHD, and worrying about my carb intake. Then of course there are all the days I spend at the hospital for appointments and tests. I haven't had a good night's sleep in about two weeks because of the steroids I'm on. Not as if I have anything important to spend time on or anything, but thinking about medical crap all day long is pretty low on my list of "ways I would choose to spend my time."
At least I have food, my drug of choice, to distract me. In fact, I might be ready for some ice cream now. Luckily my parents are full co-conspirators in my quest to eat whatever I want. I've lost 20 lbs since October and am still losing weight. Last night I got to eat all of the crispy skin from the roast chicken. Yum!
Here's another gratuitous ice cream shot to finish. Using a small tea cup is my effort at portion control so that I don't drive my glucose too high. See why ice cream is my favorite?
13 comments:
Hi Mir...
Oh.. that made me tear up, girl!!! I wish I could tell you it will all be great soon and you won't ever have to go through this again! I really wish I could...
I am glad you wrote about it though, because I know writing about our feelings is part of the process that makes us feel somehow better-- but maybe not...
I wish it would all just GO AWAY and leave you alone once and for ALL!!
I really admire your strength, tough.. I don't know what I would do... but, I guess we never do until we're in a situation and then we have to really deal with it... cope and somehow manage and try...
For the ice cream.. I'm really glad you got the insulin and that you can eat again and that it makes you feel better to have your "ice cream!" I didn't know they even made a bumpy cake ice cream flavor-- I'm impressed... Wonder if they do a red velvet ice cream in the south.. I'll google it next...
I sent you a ton of pics today.. I went on my Mac desktop and picked out a few.. I haven't put these on my blog but I may have sent some to you back in June..I don't remember!
Anyhow.. have a good weekend...
Thinking of you and sending good thought!
Leese
I always start to comment on your blog posts but then stop myself half way through because I never know what to say -- I never know if you want encouragement, or to say that people hope you feel better, or sympathize when life sucks, or to tell you about "God's plan" or something like that.. so I usually don't finish my thought because I just don't know what could possibly do you any justice.
But, screw it, i'll just start commenting anyway and here's what came to my mind today.
Damn girl. You are a fighter. And not only that, you are selfless. I can't believe you are even giving the haitians/starving/impoverished/etc a second of your thoughts when you're up against a personal earth quake/crisis/drama every single freaking day. If I were in your shoes, I would be a big whiny baby -- no, if I were in your shoes, I wouldn't be there anymore, because I would have given up as soon as the going got tough. You are courageous, and I wish for the life of me that I could be more like you! Here I am thinking i've got problems.. I'd gladly share a day (a week or a year, even) of mine with you so that you could experience what it's like to have it easy for once.
I am so glad that you write so fearlessly because it's eye opening. You are putting into words everything that i've ever wanted to know about cancer, and i'm glad to be able to have a glimpse into what it's like so that I can appreciate my health even more. I'm sure you'd take my asthma over GVHD anyday.
Those needles sure look like they really suck -- I would be such a chicken about having to give myself shots! But Moose Tracks.. what I would give to be sharing some of that with you! mmm.
Mira, wow! it is always incredible to me how very honest and open you are in your posts. Your words are always a true expression of your feelings -- they are strikingly blunt. Your empathy and sense of perspective are also admirable -- I wish I could say that whenever I am feeling down and wondering "Why me?" I think about others who are less fortunate.
All I can say is please keep writing. Please share your thoughts and frustrations, your likes and dislikes, the things that weigh you down. You have gone through so much, much much more than I can ever imagine, and I thank you for sharing a little of it with me.
I really truly hope and pray that your long list of "temporaries" will be just that and completely disappear very soon. And in the meantime, keep enjoying your decadent portion-controlled ice cream treats! And keep shining with the strength and poise you possess.
The shots I had to take because of the leg cast were no fun, bruises all over my stomach, super hot. Though that was only for a few weeks, so you are way tougher than me! And at least now you get ice cream :-)
I think everyone has things they tell themselves won't last in order to just get through to day. And you certainly have many more than most, so it's definitely okay to feel frustrated. "It could be worse" is something we say to make ourselves feel less selfish, when really, sometimes it's totally okay to be selfish! You've had a lot of crap to deal with, for a long time, so don't worry about the rest of the world, just focus on you and what you need to feel better about things.
Wow, what wonderful comments. These all mean so much to me.
A lot of this post was blowing off steam and expelling some negative energy and thoughts. I find that keeping it all inside makes me feel much more crazy and once it's been let out into the universe my mental state is much improved. I'm also not so selfless as you want to give me credit for. There are plenty of times when I have no sympathy for anyone else's problems. Like stupid little colds. I don't care if you have a runny nose. Take some Advil Cold and Sinus and quit complaining!
Part of it too is the need for basic human contact and acknowledgment that I still exist. My social circle is pretty small these days because I'm still on lockdown for the next month and a half-ish. It's nice to have a little reinforcement that I'm not forgotten or in this by myself.
Thank you, blog world, for putting up with my ramblings, for finding them somewhat interesting, and making me feel thought about. You guys are almost as good as ice cream!
Oh... If I were "ice cream" -- what flavor would I be?!!!
---Tutti Fruitti, I think!!!!
that or coffee chip...
You can have my share of ice-cream - you know I'm the only female who doesn't like it!
The different between the two needles is scary. I don't mind injections, I had a lot when I was a kid because I was allergic to many things. Somehow, I wasn't anymore when I entered my teen years. But I was getting like one shot a day and I could do it myself (and brag about it).
That said, I don't like these big needles, they make your muscles of whatever sore.
Okay, your life right now sucks and I know this is the second time. Who cares there people sicker than you... what matters is you right now!
How do you spend your time at home? Can you give us an idea of your routine? Maybe we can come up with ideas! Boredom sucks above all.
Hi Mira,
I strongly believe too that each of us needs & "reality check" at times when we get feeling too sad.
I wish for you too that the "HAVE TO" list will shrink with time, and the "WANT TO" LIST will grow. Of course, it's all necessary for your health, even if it's still crappy !
Insuline needles don't phase me- my husband is diabetic and it's a part of everyday life for him. So, if it allows you to have ice cream than it's nothing !!
Like Leesa said, writing all your feelings helps a lot. You know that your friends are around you.
Hugs XX
Aww, Mira, I could've told you that the insulin shots don't hurt! Hey, do you want to borrow my old pump? It's still here in the closet... I'm not sure it would be legal, but I'd totally lend it to you and you'd only have to change the site once every few days rather than regular injections. Let me know. ;-)
oh my dear sweet lady. i'm glad you're able to eat stuff now. it's so hard. I miss seeing you regularly. and it's horrible knowing that it's not because of something fun like a trip to France but because of something crap like this. you are so strong, and it IS only temporary, of course, but the period when it's happening is unbearable.
So, here's my random and somewhat funny thought of the day: do you know the dating-age-rule-of-thumb? To figure out the youngest person you can date, divide your age in two and add seven and if you date someone in that age range it's not creepy. However, I just realized the other day that we're only two years away from being able to date people as old as 40 which still seems much too old to me. yikes!
love
Mary
xx
Leesa, you would be cupcake flavored ice cream!
Zhu - you're a woman of action, I like that. Mostly I'm on the computer, watching DVDs or movies, doing a little art. I love to read but after chemo you can have some trouble concentrating, so I'm unfortunately not reading much. It's getting better though. Any suggestions are welcome!
Barbara - thanks. Like I said, I thought the insulin would be a lot worse than it actually is. Sticking a needle in yourself still takes a little getting used to though. You know, that inborn sense of not wanting to hurt yourself.
Mary - thanks lovely. I don't think I need the pump at this point, but I will keep it in mind. I don't need injections below 200, they have me on low requirements, and I'm slowly finding ways to keep the glucose lower. Still learning, and I know you've been there and done that. That dating rule of thumb is kind of creepy! I wouldn't want to date a 19 year old OR a 40 year old!
For books, I'd recommend Marian Keyes (maybe I mentioned her before?). Irish author, great stories that make you laugh and cry. A bit on the chick lit side but not the dumb kind ;-)
I know what you mean, doing stuff when you have no energy is hard. How about listening to postcast? I'm addicted to American Public Media, they have great free podcast. I love "the story" (http://thestory.org/podcasts). The archives are here: http://thestory.org/archive/podcast.xml
I'll come up with better ideas!
I like Marian Keyes too. But I like don't like anything the way I love ice cream.
Except maybe complaining - and I have NO excuse...but, the good news is, no one is hurt by you complaining, provided you enjoy it :) But feeling guilty for complaining...now thats the worst. Its just rubbing salt in a wound...
I like Marian Keyes too. But I like don't like anything the way I love ice cream.
Except maybe complaining - and I have NO excuse...but, the good news is, no one is hurt by you complaining, provided you enjoy it :) But feeling guilty for complaining...now thats the worst. Its just rubbing salt in a wound...
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