Whoa - don't panic! The title is referring to the fact that I finished radiation treatments today. Plenty more gas left in this tank baby.
I am very relieved this is over. Without a doubt, radiation is/was worse than the surgery and in some ways worse than chemo. At least with chemo I'd have a couple of totally miserable days, then a couple of weeks of almost-normalcy. Once the side effects kicked in with the radiation - nothing but misery and the last two weeks (and next two weeks as well) have been particularly painful. I actually took a heavy-duty painkiller tonight because my mouth is just screaming with hurt (so once that starts to take effect it will be adios on the blog). I consider myself pretty tough, got myself off painkillers fairly quickly in the hospital and haven't used any since I've been home, except for the occasional Tylenol or Motrin. But I sissied out tonight - I figured that after driving home from work crying for 20 exits or so on the LIE I deserved a little break.
One of the worst parts was not being able to cry TO anybody, not being able to reach out for comfort because of not being able to talk without further adding to the pain. It's hard when I can't explain what hurts and when I can't express frustration at the slow process of treatment and when I want to vent about what a huge mistake it was to even have the surgery (not really, but it's what I feel at times) and when I want to just cry over the fact that I will be forever disfigured and freakish looking. I know I pour much of this out when I blog, but I would have loved to have picked up the phone while driving (yes, hands free!) and called Lysa or Patty or Mary to share my sorrowful tale of woe.
Instead, while I'm heading home I try to distract myself by turning on my satellite radio. First song up tonight? "Do You Really Want to Hurt Me?" by Culture Club. I actually said out loud, "Are you kidding me?" I changed the station...to hear "Burnin' for You" by Blue Oyster Cult. Come on! Another conspiracy? Like the food commercials? Thank goodness when I switched again it was to a song that was relatively benign vis-a-vis my circumstances ("Sober" by Pink). Then again, I haven't had anything to drink since this ordeal began...
And of course, there is always something to remind me that I am not nearly as bad off as many others. Witness today when, as I was leaving, I spotted a young girl, four years old, hair just starting to grow in after chemo, surgical mask on her face, sitting patiently on her mother's lap, awaiting her first radiation treatment. I pray her journey is a more comfortable one than mine, that her prognosis is a good one, that her mother has the strength to bear the illness of her precious child, that health and a long life awaits her. And I thank God for the bounty of good health enjoyed by my own children.
Fashion alert - I am wearing high heels again. Flats...be gone! Now if I could only find some clothes that fit (amazingly, an inability to eat much causes weight loss). Not to worry...I plan on putting a fair amount of what I've lost (about 20 pounds) right back on. As soon as I can taste food that is.
My 50th birthday has come and gone with little fanfare at home (although Taryn and Ian both made me feel quite special with the gifts they chose for me), but a sweet celebration at work. Sheryl very considerately made me a jello mold, knowing I couldn't really have or enjoy cake (this is a very big deal - Sheryl does NOT regularly make desserts, so she gets a shout-out for that), and there were banners and streamers and flowers and cards. And lots of birthday wishes from all of you. It may not have been the birthday I was dreaming of, but on a certain level I felt wonderful about having fought so hard to make it this far. Many more, many more...
And now, the "I love you man" moment has arrived so I will take my leave to enjoy this little pain-free buzz that I will pay for tomorrow with grogginess and, quite possibly, crankiness...but that's tomorrow and this is tonight. Is that a smile on my face?
Blessings and Love to All.
Wednesday, May 27, 2009
Sunday, May 17, 2009
Hungry Like The Wolf
There is a vast conspiracy out there among television programmers to torture me, as I have noticed that every other commercial involves food. Food I want. Food I am weeks away from being able to enjoy. I want Outback Steakhouse, and Applebee's, and Kentucky Grilled Chicken, and Olive Garden. I want fresh fruit and chocolate and salad and potato chips and small baby peas and penne alla vodka. I want a Corona with lime, a Diet Pepsi, a cosmopolitan and an iced tea. Why, oh why, are they doing this to me? (And don't ask me to turn off the TV - Jack Bauer is 2 hours away from saving the world again!)
This week was (as expected) quite difficult but here it is Sunday again and I made it through. Seven more treatments to go (yes, I've got a countdown going on). The pain shifts inside my mouth - as lesions heal, new ones take their place in other spots. Right now, it is my cheek (inside, up by the teeth) and the side of my tongue that hurts the most. No matter where the pain is though, it is unavoidable that it hurts to speak and to eat (well, I am starting to sound like a broken record on that one!). The "sunburn" on my face is now very noticeable, very red, very dry (despite my best efforts to keep it moisturized), very itchy, and just starting to be very painful. I'm realizing that, just like any other sunburn, once I am done with the treatments it will take a long time to fade to a tan, and then even more time to fade completely so that my face is normal again. I told Warren that if he doesn't buy me a hot tub I'm just going to tell people that my husband hits me (kidding!!).
It is hard to believe that tomorrow I am going to be 50 years old (c'mon, you know I had to work in my birthday somewhere!). I was reflecting on the fact that I couldn't really celebrate my 40th because I was recovering from surgery (the emergency hysterectomy). I was supposed to go to Paris with a friend who was also turning 40 a couple of weeks after me - and instead of waiting for me to recover, she went with her boyfriend because she was determined to turn 40 in Paris! Ah, loyalty! Actually, it worked out great - I ended up going with Patti B. to Paris and London the next year for Patti's 40th and we had a blast. So...where to next year Patti?
I confess to being saddened over my 50th. I was very much looking forward to turning 50, to celebrating in a grand way (GALAGANZA!), to feeling well and strong and invincible, to a day of smiles and spoiling and cake and cosmos, to appreciating the half-century of life I've been privileged to enjoy. And while I certainly realize that I can celebrate any time (at least that's what everyone tells me)...really, it is not the same. I know I talk about a "birthday month" celebration, but THE DAY is the thing. It's the one day that's all mine (and Tina Fey's and George Strait's and Pope John Paul II's...) and I really, really wanted tomorrow to be wonderful. And I am sorry if I sound whiny because I should perhaps just be grateful I am alive and not be so hungry for more, but I sure would have liked not to be feeling so miserable on what is, to me, a really special day.
And I AM grateful for those of you who have already tried to make it a terrific day (cards, gifts and flowers have already arrived from Mary and Carol, Bonnie and Dave, and the Tobin family) - I promise to make the best of the day that I can. For when you get right down to it, how many more really do I (or any of us for that matter) have? 50 years - go figure.
My prayers and thoughts continue to go out to Aunt Barbara and Danny B., both recovering from major surgery and (so I'm told) doing well. There are plenty of us struggling back to health and I know we are all making every effort to do so in a positive and optimistic fashion (even when we don't want to!).
Blessings and Love to All - and Happy 50th Birthday to me!
This week was (as expected) quite difficult but here it is Sunday again and I made it through. Seven more treatments to go (yes, I've got a countdown going on). The pain shifts inside my mouth - as lesions heal, new ones take their place in other spots. Right now, it is my cheek (inside, up by the teeth) and the side of my tongue that hurts the most. No matter where the pain is though, it is unavoidable that it hurts to speak and to eat (well, I am starting to sound like a broken record on that one!). The "sunburn" on my face is now very noticeable, very red, very dry (despite my best efforts to keep it moisturized), very itchy, and just starting to be very painful. I'm realizing that, just like any other sunburn, once I am done with the treatments it will take a long time to fade to a tan, and then even more time to fade completely so that my face is normal again. I told Warren that if he doesn't buy me a hot tub I'm just going to tell people that my husband hits me (kidding!!).
It is hard to believe that tomorrow I am going to be 50 years old (c'mon, you know I had to work in my birthday somewhere!). I was reflecting on the fact that I couldn't really celebrate my 40th because I was recovering from surgery (the emergency hysterectomy). I was supposed to go to Paris with a friend who was also turning 40 a couple of weeks after me - and instead of waiting for me to recover, she went with her boyfriend because she was determined to turn 40 in Paris! Ah, loyalty! Actually, it worked out great - I ended up going with Patti B. to Paris and London the next year for Patti's 40th and we had a blast. So...where to next year Patti?
I confess to being saddened over my 50th. I was very much looking forward to turning 50, to celebrating in a grand way (GALAGANZA!), to feeling well and strong and invincible, to a day of smiles and spoiling and cake and cosmos, to appreciating the half-century of life I've been privileged to enjoy. And while I certainly realize that I can celebrate any time (at least that's what everyone tells me)...really, it is not the same. I know I talk about a "birthday month" celebration, but THE DAY is the thing. It's the one day that's all mine (and Tina Fey's and George Strait's and Pope John Paul II's...) and I really, really wanted tomorrow to be wonderful. And I am sorry if I sound whiny because I should perhaps just be grateful I am alive and not be so hungry for more, but I sure would have liked not to be feeling so miserable on what is, to me, a really special day.
And I AM grateful for those of you who have already tried to make it a terrific day (cards, gifts and flowers have already arrived from Mary and Carol, Bonnie and Dave, and the Tobin family) - I promise to make the best of the day that I can. For when you get right down to it, how many more really do I (or any of us for that matter) have? 50 years - go figure.
My prayers and thoughts continue to go out to Aunt Barbara and Danny B., both recovering from major surgery and (so I'm told) doing well. There are plenty of us struggling back to health and I know we are all making every effort to do so in a positive and optimistic fashion (even when we don't want to!).
Blessings and Love to All - and Happy 50th Birthday to me!
Saturday, May 9, 2009
Don't Speak
Three months ago I was sore and swollen, couldn't eat, couldn't speak, and drooled incessantly. My, my how far I've come...NOT!
Another week of radiation completed and while the side effects haven't abated, I think I am managing them a little better, partly helped by the fact that unless I absolutely have to I don't speak. The lesions are so numerous on my lips and tongue, and so painful when I do talk, that I find it's just better not to say a word (sound of children rejoicing in the background). Plus, my speech is difficult at best to understand (yeah, you try talking without moving your lips and tongue and see how you sound) and I get terribly frustrated if I have to repeat myself. At work this hasn't been too bad - there is much that can be done by e-mail, at least on a temporary basis. And at home, Warren and the kids are very understanding. What does get to me is not being able to make (or accept) calls in general - from my cousin Lysa (who I hardly ever get to really talk to); to my step-dad and uncle (to ask about their health); from my sister (who doesn't always want to know the details of my treatment process and therefore has trouble understanding why I can't talk to her for long); to friends I want to reach out to. As much as I love writing, it becomes less appealing when it's all I can do to communicate.
I did see my radiation oncologist Thursday, and he gave me a numbing solution to rinse my mouth with before meals so I could at least eat (they actually call it "Miracle Mouthwash"). It only lasts for 20 minutes or so, which is fine because I am not eating much anyhow (hard to keeping shoveling tasteless food into one's mouth). I have lost weight, more than I would have liked, but far from being emaciated. Thank goodness for Ensure! An interesting thing that I have noticed is how important texture has become for me. It's always been somewhat of a factor in my food choices (for instance, I like the flavor of mushrooms, but biting them? Nuh-uh), but now it is critical to choose a texture I can tolerate since I can't taste anything. Scrambled eggs and Kraft macaroni and cheese? Yes to those. Oatmeal and applesauce? Not happening. And I have no idea why!
I also saw the plastic surgeon this week, who I adore and who calls me "my love" and who, God Bless him, gave me the OK to exercise when I feel up to it (which, as you can guess, is not yet). Monday I see the endocrine surgeon for a regular follow up visit as well. And so it goes.
Tomorrow is Mother's Day and I remember well the last two weeks of my mother's life, my brother and I holding vigil by her bedside from early morning to late evening, sharing stories and meals with her until lucidity and life slipped slowly away, as did any negative memories of difficult times (isn't that how it should be?). She left me with so much - independence, compassion, a thirst for knowledge, a sense of style, an ability to laugh, and an unwavering belief in love (I always say of the woman who married 4 times that she was going to do it until she got it right -which she finally did with my stepdad Ken). I miss her every day. And I hope that when the time comes (not too soon please!) for Taryn to spend days at my bedside, easing my transition to the next life, that I will have successfully given her all that I received from my own mother and more.
And now...I shall speak no more.
Another week of radiation completed and while the side effects haven't abated, I think I am managing them a little better, partly helped by the fact that unless I absolutely have to I don't speak. The lesions are so numerous on my lips and tongue, and so painful when I do talk, that I find it's just better not to say a word (sound of children rejoicing in the background). Plus, my speech is difficult at best to understand (yeah, you try talking without moving your lips and tongue and see how you sound) and I get terribly frustrated if I have to repeat myself. At work this hasn't been too bad - there is much that can be done by e-mail, at least on a temporary basis. And at home, Warren and the kids are very understanding. What does get to me is not being able to make (or accept) calls in general - from my cousin Lysa (who I hardly ever get to really talk to); to my step-dad and uncle (to ask about their health); from my sister (who doesn't always want to know the details of my treatment process and therefore has trouble understanding why I can't talk to her for long); to friends I want to reach out to. As much as I love writing, it becomes less appealing when it's all I can do to communicate.
I did see my radiation oncologist Thursday, and he gave me a numbing solution to rinse my mouth with before meals so I could at least eat (they actually call it "Miracle Mouthwash"). It only lasts for 20 minutes or so, which is fine because I am not eating much anyhow (hard to keeping shoveling tasteless food into one's mouth). I have lost weight, more than I would have liked, but far from being emaciated. Thank goodness for Ensure! An interesting thing that I have noticed is how important texture has become for me. It's always been somewhat of a factor in my food choices (for instance, I like the flavor of mushrooms, but biting them? Nuh-uh), but now it is critical to choose a texture I can tolerate since I can't taste anything. Scrambled eggs and Kraft macaroni and cheese? Yes to those. Oatmeal and applesauce? Not happening. And I have no idea why!
I also saw the plastic surgeon this week, who I adore and who calls me "my love" and who, God Bless him, gave me the OK to exercise when I feel up to it (which, as you can guess, is not yet). Monday I see the endocrine surgeon for a regular follow up visit as well. And so it goes.
Tomorrow is Mother's Day and I remember well the last two weeks of my mother's life, my brother and I holding vigil by her bedside from early morning to late evening, sharing stories and meals with her until lucidity and life slipped slowly away, as did any negative memories of difficult times (isn't that how it should be?). She left me with so much - independence, compassion, a thirst for knowledge, a sense of style, an ability to laugh, and an unwavering belief in love (I always say of the woman who married 4 times that she was going to do it until she got it right -which she finally did with my stepdad Ken). I miss her every day. And I hope that when the time comes (not too soon please!) for Taryn to spend days at my bedside, easing my transition to the next life, that I will have successfully given her all that I received from my own mother and more.
And now...I shall speak no more.
Sunday, May 3, 2009
One Week
What a difference a week makes. Last week I wrote that I had no major side effects yet (other than lack of taste and a dry mouth). This week...a totally different story.
Amazingly, right now I long for the days when my only problem was that I couldn't taste food. My poor oral cavity is so swollen and so filled with radiation sores that it is hard to speak, and almost impossible to eat. The lesions are everywhere - on my tongue (right where it brushes against the teeth when talking, drinking or eating), on my lip, on the inside of my cheeks - and they are large and deep. The pain is almost constant. My only consolation (and it's a small one because this really does SUCK big time) is that only one side of my face is affected (Patty, I don't know how your brother survived bi-lateral radiation). It took every ounce of toughness (some would say stupidity) I have to teach Sunday School today because every time I spoke it was torture. Thank goodness Taryn was there to handle some of the lesson (which was "Jesus Ascends" and don't think I wasn't wishing at times that I was going with Him!).
Oh, I get some temporary relief now and then (and by temporary I mean minutes of relief, not hours) by gargling and rinsing with various and sundry products and mixtures (hey, at least I can't taste how bad they are). I'm sure I could take some strong painkillers (God knows I have enough of those in the house) but I hate feeling out of it in addition to everything else and I don't want to waste what energy I do have lolling around in a stupor.
Unfortunately, I am having trouble focusing on just getting through day-to-day because I can't help thinking over and over how much longer I have ("I'm not even halfway through and it's already this bad?!" "It's only May 3rd, this is going to go on until the 27th?!" "I'm going to feel this way on my BIRTHDAY??!!"). I long to get back to yoga classes (I'm very bad at solo meditation), where focusing on the present seemed to come so much easier. I do see the plastic surgeon this week for a follow-up visit - perhaps clearance for exercise will be in the cards (if not, I want new cards!).
Deep breath. And another. And another.
And another.
Amazingly, right now I long for the days when my only problem was that I couldn't taste food. My poor oral cavity is so swollen and so filled with radiation sores that it is hard to speak, and almost impossible to eat. The lesions are everywhere - on my tongue (right where it brushes against the teeth when talking, drinking or eating), on my lip, on the inside of my cheeks - and they are large and deep. The pain is almost constant. My only consolation (and it's a small one because this really does SUCK big time) is that only one side of my face is affected (Patty, I don't know how your brother survived bi-lateral radiation). It took every ounce of toughness (some would say stupidity) I have to teach Sunday School today because every time I spoke it was torture. Thank goodness Taryn was there to handle some of the lesson (which was "Jesus Ascends" and don't think I wasn't wishing at times that I was going with Him!).
Oh, I get some temporary relief now and then (and by temporary I mean minutes of relief, not hours) by gargling and rinsing with various and sundry products and mixtures (hey, at least I can't taste how bad they are). I'm sure I could take some strong painkillers (God knows I have enough of those in the house) but I hate feeling out of it in addition to everything else and I don't want to waste what energy I do have lolling around in a stupor.
Unfortunately, I am having trouble focusing on just getting through day-to-day because I can't help thinking over and over how much longer I have ("I'm not even halfway through and it's already this bad?!" "It's only May 3rd, this is going to go on until the 27th?!" "I'm going to feel this way on my BIRTHDAY??!!"). I long to get back to yoga classes (I'm very bad at solo meditation), where focusing on the present seemed to come so much easier. I do see the plastic surgeon this week for a follow-up visit - perhaps clearance for exercise will be in the cards (if not, I want new cards!).
Deep breath. And another. And another.
And another.
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