I have a folder of poems that take me in, or whatever it is that exceptional poems do, every time I read them. I recently read the following two, one next to the other as below, for the first time, and they seem to speak very powerfully to one another. And no, the second poem is not about my health.
He Attempts to Love His Neighbours
My neighbours do not wish to be loved.
They have made it clear that they prefer to go peacefully
about their business and want me to do the same.
This ought not to surprise me as it does;
I ought to know by now that most people have a hundred things
they would rather do than have me love them.
There is television, for instance; the truth is that almost everybody,
given the choice between being loved and watching TV,
would choose the latter. Love interrupts dinner,
interferes with mowing the lawn, washing the car,
or walking the dog. Love is a telephone ringing or a doorbell
waking you moments after you've finally succeeded in getting to sleep.
So we must be careful, those of us who were born with
the wrong number of fingers or the gift
of loving; we must do our best to behave
like normal members of society and not make nuisances
of ourselves; otherwise it could go hard with us.
It is better to bite back your tears, swallow your laughter,
and learn to fake the mildly self-deprecating titter
favoured by the bourgeoisie
than to be left entirely alone, as you will be,
if your disconformity embarrasses
your neighbours; I wish I didn't keep forgetting that.
- Alden Nowlan
-----------------------------------------------
As Death Approaches
I can't believe I'm laughing!
I'd have sworn I'd be
shaking or sniveling.
And I sure didn't expect
a limousine.
I've never been in a limousine.
No biggy.
I've had better than fame.
Who needs the pressure?
As for fortune, I'm filthy.
That's why I'm laughing.
I've had so much love:
the giving, the getting.
It's shameful.
It's embarrassing.
And it's too late.
No one can take it away!
And I've had the pain
to help me appreciate it.
Thank God for the pain!
Easy for me to say
now that I'm going!
But no, seriously,
the kicks in the teeth,
the gut, the rugs
pulled out, slammed doors,
setbacks, snubs.
Without them I'd
never have recognized
Love, bedraggled,
plain eyes shining,
happy to see me.
Do I want more?
Of course I want more!
I always want more
of everything: money, hugs,
lovemaking, art, butter,
woods, flowers, the sea,
M&Ms, chips, tops, bottoms,
trips - I did give up drinking -
time, sure, and yes,
I'd like to see
my grandchildren,
if there are any.
I'd like to see my books
but more more has never
been good for me anyway.
Enough - that's what I've
always needed to learn,
and is there a better way?
So this laughter
I had to work up to
through so many tears,
it just keeps coming
like a fountain, a spray.
Let it light on you
refreshment, benediction,
as I'm driven away.
- Susan Deborah King
from One-Breasted Woman
Holy Cow! Press, 2007
Monday, September 14, 2009
Thursday, August 27, 2009
Wednesday, November 19, 2008
Finished! Finito! Terminado! Acabado! законченный! 終わった! ξοφλημένος! Befejezett! !مُنْتَهٍ Slut! (it's Swedish, I swear)
No more chemo, today was the last day. Forever I hope. And I survived unscathed by Margaret - she who threatened me with digital dismemberment(s) if I ever hit the 'mute' button on the infernal infusion machine alarms when they went off. What she doesn't know won't hurt her, right Jane? I will miss all the good folks involved in my care - and I'll be around from time to time - but boy am I glad this is over. I can hardly remember what it was like to have 2 or 3 weeks go by without being knocked down again. But I have no doubt I'll get used to it. While making no promises, and he can't as my treatment falls in the realm of 'salvage therapy' at this point, my oncologist told me he thinks there is reasonable expectation for a cure from this. (From the experts at Wikipedia, "Salvage therapy is a form of treatment given after an ailment does not respond to standard treatment.") Technically there are no protocols for a recurrence after 9 years. And I have to add that we scan again in late January: we expect good things, but they can't be guaranteed. As I've been told, 'if things show up again, you're up a creek.'
That said, I have no hesitation in adding that I think I have gotten the best possible treatment from the best possible team on earth. I can't imagine that I could have put together a more professional, intelligent and compassionate group, from my doctors to nurses, phlebotomists and Miss Diane the snack lady. Johns Hopkins has earned its number 1 reputation with me.
So, those things being said, it's now two weeks of nadir point, where my blood counts bottom out and then the climb-out period after that. During this time I'm betting - since I've needed them after the last 2 rounds - that I'll get an infusion of red cells and maybe some platelets. I just don't want another round in the hospital, as good as they were to me. We are prepared for that; I'll be doing blood tests twice a week, and I know what that kind of anemia feels like. And no, it won't be over after the next two weeks; as I think I said in the past, this has a cumulative effect. The period after that will be recovery of my stamina (back to the gym!) and what cognitive abilities I have left (back to crossword puzzles!). I hope to return to work toward the end of January.
As I had to get a form back to the HR department today, I stopped by work and got big hugs from everybody which was great! I miss you all and it was good to touch base again. Sorry to all the people I missed, but it won't be long now. You may regret my return and the ensuing harassment!! Hal you were saved by the Lasix today!!!
OK, it's late - well, 9:15, and I have to take pills in 15 minutes and then I can go to bed which will happen at about 9:35. Has any of this made sense?
Cheers ~
Mark
PS - A picture from the first snowstorm here this year, back at the end of October - but it was all out in the western part of the state. (Baltimore Sun photo by Doug Kapustin / October 29, 2008) We had our first flurries in town yesterday, nothing stayed. I'm told the Farmer's Almanac is calling for a cold, wet (snowy for us) winter. Oh boy!
That said, I have no hesitation in adding that I think I have gotten the best possible treatment from the best possible team on earth. I can't imagine that I could have put together a more professional, intelligent and compassionate group, from my doctors to nurses, phlebotomists and Miss Diane the snack lady. Johns Hopkins has earned its number 1 reputation with me.
So, those things being said, it's now two weeks of nadir point, where my blood counts bottom out and then the climb-out period after that. During this time I'm betting - since I've needed them after the last 2 rounds - that I'll get an infusion of red cells and maybe some platelets. I just don't want another round in the hospital, as good as they were to me. We are prepared for that; I'll be doing blood tests twice a week, and I know what that kind of anemia feels like. And no, it won't be over after the next two weeks; as I think I said in the past, this has a cumulative effect. The period after that will be recovery of my stamina (back to the gym!) and what cognitive abilities I have left (back to crossword puzzles!). I hope to return to work toward the end of January.
As I had to get a form back to the HR department today, I stopped by work and got big hugs from everybody which was great! I miss you all and it was good to touch base again. Sorry to all the people I missed, but it won't be long now. You may regret my return and the ensuing harassment!! Hal you were saved by the Lasix today!!!
OK, it's late - well, 9:15, and I have to take pills in 15 minutes and then I can go to bed which will happen at about 9:35. Has any of this made sense?
Cheers ~
Mark
PS - A picture from the first snowstorm here this year, back at the end of October - but it was all out in the western part of the state. (Baltimore Sun photo by Doug Kapustin / October 29, 2008) We had our first flurries in town yesterday, nothing stayed. I'm told the Farmer's Almanac is calling for a cold, wet (snowy for us) winter. Oh boy!
Sunday, November 16, 2008
Sunday night
Pat, who runs the sweet little gift shop at work (of course it's sweet, so is she), sent me a little book not long ago, entitled "Be Strong." A simple collection of great quotes on the subject. The one that has stuck with me most is from David Weinbaum (I have no idea who he is):
Standing your ground is progress
when you're battling a hurricane.
I have to bring that to mind often during the day. My head continues full of holes, especially my memory. I have some success with holding on to thoughts and tasks, but boy am I distractable. And tangential. And my impulse control is another constant worry. I've kept it largely in check - well, I haven't charged any big ticket items. Yet. (Just kidding Mother.) Worst is the neuropathy in my hands and feet. A fair portion of the sensation in my feet (like 80-90%) is gone. My hands work fine, but have a constant prickly/sticky/electrical feeling in them. The neuropathy will improve over time, I'm trying to ride it out right now. There are two medicines I could take for it: one I've tried (Neurontin), but the effective dose pretty much puts me to sleep. The other, Lyrica, has a $50 co-pay per month. I will try it if I need to, but cash is king right now.
I was originally scheduled to start my last round of chemo tomorrow (Monday, 11/17) but I don't feel completely recovered from the last round yet. I've been talking with my wonderful nurse, Jane, and she said she'd take the idea of postponing the round a week to Dr. Ambinder. She thought there was a chance he would support it, and on that I made some decisions about a trip in the near future. Well it turns out his thinking is that the sooner I get it done, the better. If there's anything left - and all it takes is one cell - the chemo is more effective as scheduled. Can't argue with him on that; on the issue of my 'readiness' he said they could handle whatever adverse effects may occur. Gotta say, they did a fine job last weekend.
And the truth is, this weekend (yesterday and today) is about the time I'd be traveling, and I've been exhausted the whole time. I would not have been able to do much, and I don't want to be around crowds now that cold and flu season are almost here.
I have rearranged my trip to California to give me almost four whole weeks to recover from this. (Southern California the 19th - 29th, Northern Cal 29th - 1/6). Just completed the arrangements this afternoon; I know, I have some emailing to do.
So on with it! The last battle. More tattered armies than mine have won, and some, more heavily armed, have lost. Three days only, I will be done by Wednesday evening. Done forever I hope. Then scans in January to see if things are gone gone.
Sleepy pill is taking over. Good night all.
Cheers ~~~~~~~~~~~~~~~~~~~~~~~~
when you're battling a hurricane.
I have to bring that to mind often during the day. My head continues full of holes, especially my memory. I have some success with holding on to thoughts and tasks, but boy am I distractable. And tangential. And my impulse control is another constant worry. I've kept it largely in check - well, I haven't charged any big ticket items. Yet. (Just kidding Mother.) Worst is the neuropathy in my hands and feet. A fair portion of the sensation in my feet (like 80-90%) is gone. My hands work fine, but have a constant prickly/sticky/electrical feeling in them. The neuropathy will improve over time, I'm trying to ride it out right now. There are two medicines I could take for it: one I've tried (Neurontin), but the effective dose pretty much puts me to sleep. The other, Lyrica, has a $50 co-pay per month. I will try it if I need to, but cash is king right now.
I was originally scheduled to start my last round of chemo tomorrow (Monday, 11/17) but I don't feel completely recovered from the last round yet. I've been talking with my wonderful nurse, Jane, and she said she'd take the idea of postponing the round a week to Dr. Ambinder. She thought there was a chance he would support it, and on that I made some decisions about a trip in the near future. Well it turns out his thinking is that the sooner I get it done, the better. If there's anything left - and all it takes is one cell - the chemo is more effective as scheduled. Can't argue with him on that; on the issue of my 'readiness' he said they could handle whatever adverse effects may occur. Gotta say, they did a fine job last weekend.
And the truth is, this weekend (yesterday and today) is about the time I'd be traveling, and I've been exhausted the whole time. I would not have been able to do much, and I don't want to be around crowds now that cold and flu season are almost here.
I have rearranged my trip to California to give me almost four whole weeks to recover from this. (Southern California the 19th - 29th, Northern Cal 29th - 1/6). Just completed the arrangements this afternoon; I know, I have some emailing to do.
So on with it! The last battle. More tattered armies than mine have won, and some, more heavily armed, have lost. Three days only, I will be done by Wednesday evening. Done forever I hope. Then scans in January to see if things are gone gone.
Sleepy pill is taking over. Good night all.
Cheers ~~~~~~~~~~~~~~~~~~~~~~~~
Tuesday, November 11, 2008
Admitted-ly
Since last we met here, three major things have happened: the presidential campaign is over (hallelujah) with results that we are all aware of (HALLELUJAH!!! - OK, California needs a slap upside its coast), my computer seems to have gotten fixed (the Geek Squad is safe from the Mark Squad for the moment) and I had a little sojourn in the hospital.
The deal with the Hopkins clinic is that any time I get a fever over 100.4 I have to call them or the on-call resident and tell them. My first clue last Thursday (11/6) was that I woke up after 8 solid hours of sleep. It's a heavenly thing, but not normal for me. Second clue was that I hit the wall energy-wise at 1 in the afternoon (after three hours of errands that included taking the computer in for the second time). I came immediately home, put my bags on the kitchen counter and went upstairs to bed, where I slept soundly for three hours. Again, heavenly but not normal. Clue #3 was that I woke up and had chills when I got out of bed. Thermometer time. 101.4. So I thought, well have something to drink, move around a bit. 101.6 Keep drinking (no, not cocktails), fan yourself. 101.8 Call your friends who are nurses, see if they can think of something to keep you from having to call the OD. None of them were home. 102 Call the damn resident, pack a bag.
The resident called back quickly, he was very nice. He said he would look at my records, check bed availability and call me back. He did, and as predicted told me to Come on down! While making preparations to leave, a nurse called to ask me a few questions and I asked her if there was anything I could say to the ER staff to make the process go a little faster. "Oh don't go the emergency room, just come to the Weinberg building and come up to the 5th floor, to unit 5B," she said. My dear, dear friend Michael came to fetch me and that's exactly what happened: I walked into the Weinberg building, took the elevator up and the person at the front desk said, "Hi Mr. Moody, you're in room 3," and pointed me toward it. The room was ready, the bed turned down and - no, no chocolate on the pillow - the nurse came in and I had an IV line in place within an hour. One reason among many that Johns Hopkins is the #1 hospital in the country; I am very fortunate.
Over the three days there I received two pints of red cells, a big bag o' platelets, two antibiotics and terrific nursing care. The fever cleared in 24 hours, but the policy is that a person has to be fever-free for 48 hours before they can be discharged. On Saturday I received a call from the fabulous Jane, my clinic nurse, vacationing in California for a long weekend. Girrrrl, you spyin' on me! They let me go on Sunday afternoon.
Monday I was pretty fatigued, possibly my body dealing with the aftereffects of the antibiotics, but it felt more like anemia. The nurse remarked that my hematocrit was low. "noun 1. the ration of the volume occupied by packed red blood cells to the volume of the whole blood as measured by a hematocrit" - I have no idea what that means, but a low count means you're tired. I only got out the house to pick up the computer, then napped off and on. The computer seems fixed, no problems so far. Today has been better; out to lunch with friends, then a stop to look for a new kitchen faucet, then home. But still pretty tired when I got here, feels like my energy is
And my body has given me the five minute warning. I know there was more I wanted to say; perhaps it has gone into a neuron that will be easy to relocate. Thanks all, for continued support. More to come. Cheers ~~~~~
The deal with the Hopkins clinic is that any time I get a fever over 100.4 I have to call them or the on-call resident and tell them. My first clue last Thursday (11/6) was that I woke up after 8 solid hours of sleep. It's a heavenly thing, but not normal for me. Second clue was that I hit the wall energy-wise at 1 in the afternoon (after three hours of errands that included taking the computer in for the second time). I came immediately home, put my bags on the kitchen counter and went upstairs to bed, where I slept soundly for three hours. Again, heavenly but not normal. Clue #3 was that I woke up and had chills when I got out of bed. Thermometer time. 101.4. So I thought, well have something to drink, move around a bit. 101.6 Keep drinking (no, not cocktails), fan yourself. 101.8 Call your friends who are nurses, see if they can think of something to keep you from having to call the OD. None of them were home. 102 Call the damn resident, pack a bag.
The resident called back quickly, he was very nice. He said he would look at my records, check bed availability and call me back. He did, and as predicted told me to Come on down! While making preparations to leave, a nurse called to ask me a few questions and I asked her if there was anything I could say to the ER staff to make the process go a little faster. "Oh don't go the emergency room, just come to the Weinberg building and come up to the 5th floor, to unit 5B," she said. My dear, dear friend Michael came to fetch me and that's exactly what happened: I walked into the Weinberg building, took the elevator up and the person at the front desk said, "Hi Mr. Moody, you're in room 3," and pointed me toward it. The room was ready, the bed turned down and - no, no chocolate on the pillow - the nurse came in and I had an IV line in place within an hour. One reason among many that Johns Hopkins is the #1 hospital in the country; I am very fortunate.
Over the three days there I received two pints of red cells, a big bag o' platelets, two antibiotics and terrific nursing care. The fever cleared in 24 hours, but the policy is that a person has to be fever-free for 48 hours before they can be discharged. On Saturday I received a call from the fabulous Jane, my clinic nurse, vacationing in California for a long weekend. Girrrrl, you spyin' on me! They let me go on Sunday afternoon.
Monday I was pretty fatigued, possibly my body dealing with the aftereffects of the antibiotics, but it felt more like anemia. The nurse remarked that my hematocrit was low. "noun 1. the ration of the volume occupied by packed red blood cells to the volume of the whole blood as measured by a hematocrit" - I have no idea what that means, but a low count means you're tired. I only got out the house to pick up the computer, then napped off and on. The computer seems fixed, no problems so far. Today has been better; out to lunch with friends, then a stop to look for a new kitchen faucet, then home. But still pretty tired when I got here, feels like my energy is
And my body has given me the five minute warning. I know there was more I wanted to say; perhaps it has gone into a neuron that will be easy to relocate. Thanks all, for continued support. More to come. Cheers ~~~~~
Monday, October 27, 2008
A litany of ....
Oh Lord, where to begin? I'm sitting in Kinko's, writing from one of their rent-a-computers since my wonderful new computer is in Lexington, Kentucky getting it's processor replaced! Thank you Hewlett-Packard! Thank you Best (?) Buy! Why I had the foresight to purchase the Geek Squad's warranty/ protection plan I don't know, but I'm promised the computer will be back in 7-10 days and it won't cost me anything. Now I don't get angry often, but when I asked the Geek Squad guy how long he could last without a computer, his reply was, "I have several computers at home." And then he told me it would be 3-4 days before they could tell me what was wrong with the computer, that they had 20-some computers ahead of me!! I guess it was outlining the new anal orifice I had planned for the store manager that got me called back the next day with a diagnosis. Brad Anderson, the CEO of Best Buy will be getting an invoice for the time I've had to spend - and pay for - here at Kinko's. Amazing how their website does not list the names of their management and board of directors. But we social workers have our ways. Thank you Morningstar!
So where the hell have I been for the last 5 weeks? Around. And just what have I been doing? Nothing. (Sorry, my inner adolescent is still here from the last paragraph.) I've continued puttering around the house, taking the garden out with help from Mike and Steve and Rob - BIG BIG THANKS to you guys, there is no way I could have done that alone. I've been cleaning out books, lowering storm windows - in the 30's for the next couple of nights. It's so beautiful here, but leaves are falling everywhere. I've been reading, albeit more slowly than most. Two books by Geraldine Brooks: her current People of the Book, and her Pulitzer Prize winner March which I will finish tonight most likely. Both terrific reads, convincing characters and fascinating details. Can't recommend them enough. My relatives were very generous in giving me gift cards to book stores, and I am alternately working my way through Adam Zagajewski's new poetry collection Eternal Enemies. My head just blanked out about the other two, but I have a good excuse.
But I have no good excuse for why I took so long to post here. I am, as I think I've admitted before, a lazy and undisciplined writer (among other things). I hold up the weak shield of chemotherapy which really has been a big whack to the head the last three months. But the truth is, most of what I write about here is material I could access if a strapping young man - or Hal - or Cheryl for that matter - tied me to the chair in front of the computer and said, "No breakfast until you've written at least two pages!" Incentive or threat - you decide. Still, the process is its own reward, which I guess is why blogging can be less hard: it's instantly published, no hassling with sending it out to journals, etc. Why, when I sit down and enjoy what I'm doing as I am at this moment , don't I do it more often? It has something to do with the 'Chagrin Factor' (something I'll be offering seminars on to Republicans starting next Wednesday) : the lazier I am and the longer I wait, the worse I feel about things. I know I've said this before, and no one expects novellas out of me, but ... social worker heal thyself. Or someone whack me upside the head in a different direction. I am genuinely sorry to have been out of touch for so long, it is not for lack of love of y'all.
The other thing to write about is the litany in the title. The side effects have been mounting, which is expected. The old regimen (more about this below), ESHAP, was rough. I've been dealing with anemia and received several units of red cells, along with one of platelets, over the last couple of months. The primary issue with edema is fatigue, although it's also a sign my immune system is on the low side. I've been dealing with edema - puffy ankles as I've said - off and on as well. Makes it painful to walk. My memory has been, and continues to be, full of holes. My cognitive abilities are not where they should be. How I have the concentration to read and retain the material is a miracle to me. I am particularly grateful for it, as I've rediscovered my love of books during this time. But my impulse control is not great, and I've caught myself closing my web browser just before clicking on the final 'pay for this now' button. Not horrendously big things, but stuff I don't need to be spending money on right now. Especially with $50 co-pays for medicines, $20 for 5 parking stickers at Hopkins (which have saved me a fortune - $4 dollars to park all day; my 7 hours of time in the clinic today would normally have cost $14!). I am frustrated at not having made more progress on the list of house projects that I created when all this began. I realized that if we stick with the schedule, I am halfway through treatment. I have heard from my boss that I will be welcomed back at work, and return as a new employee, but at least I won't have to go through orientation. I know I'm going through chemo and just need to give myself a break, but, well, social worker heal thyself. Dammit! And I know I'm forgetting a bunch of other complaints that I wanted to add to this, but hey - it's chemo brain! It's a tattered shield, but it's all I've got.
Speaking of chemo, there's been a change. I mentioned to the nurse that I'd had some pretty rough neuropathy after the last round that was affecting my feet (it's no exaggeration to say that I was 'hobbling' around the house for 4-5 days afterward) and hands with numbness, tingling, feeling cold when they're not, keeping me awake at night. The doc was sufficiently concerned that he has switched me to another regimen called ICE. It stands for Ifosfamide, carboplatin and etopicide. The last one I've been taking in the last regimen, the others are new. The steroid component has also changed: from being a prednisone derivative, it is now Decadron, a big improvement from a side effect standpoint. I can tell this already in the four hours since my first infusion today. Side effects from the regimen will be fatigue, maybe some edema, possibly some cognitive effects (most likely the light-headedness I feel at the moment, but it can cause confusion up to the point of delirium! I've left an envelope by my front door about what to do in the event I start acting even goofier than I do now! It specifically states that I'm not be sent to my own hospital unless Cheryl is on the treatment team!) Anyway, it's only three days in the clinic with this regimen and then a quick trip back for a shot two days later. I wasn't sure I was going to start this today, as I'd needed red cells as recently as last Friday - not uncommon, but a little disturbing since I was three weeks out of chemo at that point, and I felt like crap on Saturday. But Sunday I felt good and got the house mostly clean and the laundry mostly done. If we stay on schedule my last round will be the week before Thanksgiving.
I am glad of the change; it was hard to imagine two more rounds of ESHAP. ICE was one of my other choices at the beginning. I asked if maybe it would target cancer cells that ESHAP might have missed, and was told that this was certainly possible but there was no way to know that. So I'm going with that possibility, and I feel good about the switch. And I don't feel nearly so hammered as I did with ESHAP at this point, but there are two more days to go. It sticks in my head that there are other things I wanted to say here, but - surprise! - I can't remember them. But I have gone on at length, and this computer is located right in the path of the air conditioner - hey, it's in the 40's outside, turn the heat up!
Thanks to Jane and Don and Margaret and Linda and Suzanne and Paula - and Rich! - you are truly the best of the best.
Thank you Caroline and the curlie-girlies for lunch last week. They are adorable!
Thank you Cheryl for the cards, the good humor and the good vibes - can't wait to get back and bug you again.!
Thank you Karen for keeping Merle and Hal on a tight leash. Well, as tight as you can make it with those two. Evergreen soon?
Thank you Nancy for lunch yesterday and for letting my cry on your shoulder via phone the other day. I really needed that. Glad I could help with the computer.
Thank you sister Nancy - no she's not a nun, she's my real sister, best anyone could ever want.
Thank you Scott and Sandy for all your prayers and support. I may not be strictly church-going, but there is definitely something to the power of prayer. And just for you - a 'buy one get one free' offer for my "Chagrin Factor" seminars starting on Wednesday! ;-)
William, you are a rock. I know I don't need the medevac issues as an excuse to communicate, but I've enjoyed our phone calls. For you, I promise to call Barack and tell him to take it easy on you! I hope Ann got my reply to her email.
To the Jennifer/Robert/Steven/Daniel/Trevor/Taylor nephew Experience - at least it has better side effects than chemo! Now just what do I mean by that...
To Matt and Trista - congratulations on the new home! Now put everything away!!
And last but hardly least, to my Mother, who has been not just my rock, but my salvation: I hope you see this at an internet cafe on your trip. It's going to be great. I love you!
To Jared and Merle - thanks for just being you! We must get together soon.
To Gwen and Ernestine and Jennifer and Hal and Michael and Dale and Jay and everyone at work: thanks so much for all your support. It continues to mean a great deal to me.
And to my neighbors Margi & April - CONGRATULATIONS!!!! Way to go on the 2 for 1 special! Addison Kai and Avery Grace, born 10/22 in the middle of the night. They are so beautiful, everyone on the block can't wait to see them. Treasure your sleep now...
OK, time for me to get some dinner and head home for another round of post-chemo pills at 9:00. I didn't forget, Jane!
With much gratitude for your keeping faith with me, and even more love and affection for you all, despite my silence ~~~~~~~~~~
Cheers ~
Mark
So where the hell have I been for the last 5 weeks? Around. And just what have I been doing? Nothing. (Sorry, my inner adolescent is still here from the last paragraph.) I've continued puttering around the house, taking the garden out with help from Mike and Steve and Rob - BIG BIG THANKS to you guys, there is no way I could have done that alone. I've been cleaning out books, lowering storm windows - in the 30's for the next couple of nights. It's so beautiful here, but leaves are falling everywhere. I've been reading, albeit more slowly than most. Two books by Geraldine Brooks: her current People of the Book, and her Pulitzer Prize winner March which I will finish tonight most likely. Both terrific reads, convincing characters and fascinating details. Can't recommend them enough. My relatives were very generous in giving me gift cards to book stores, and I am alternately working my way through Adam Zagajewski's new poetry collection Eternal Enemies. My head just blanked out about the other two, but I have a good excuse.
But I have no good excuse for why I took so long to post here. I am, as I think I've admitted before, a lazy and undisciplined writer (among other things). I hold up the weak shield of chemotherapy which really has been a big whack to the head the last three months. But the truth is, most of what I write about here is material I could access if a strapping young man - or Hal - or Cheryl for that matter - tied me to the chair in front of the computer and said, "No breakfast until you've written at least two pages!" Incentive or threat - you decide. Still, the process is its own reward, which I guess is why blogging can be less hard: it's instantly published, no hassling with sending it out to journals, etc. Why, when I sit down and enjoy what I'm doing as I am at this moment , don't I do it more often? It has something to do with the 'Chagrin Factor' (something I'll be offering seminars on to Republicans starting next Wednesday) : the lazier I am and the longer I wait, the worse I feel about things. I know I've said this before, and no one expects novellas out of me, but ... social worker heal thyself. Or someone whack me upside the head in a different direction. I am genuinely sorry to have been out of touch for so long, it is not for lack of love of y'all.
The other thing to write about is the litany in the title. The side effects have been mounting, which is expected. The old regimen (more about this below), ESHAP, was rough. I've been dealing with anemia and received several units of red cells, along with one of platelets, over the last couple of months. The primary issue with edema is fatigue, although it's also a sign my immune system is on the low side. I've been dealing with edema - puffy ankles as I've said - off and on as well. Makes it painful to walk. My memory has been, and continues to be, full of holes. My cognitive abilities are not where they should be. How I have the concentration to read and retain the material is a miracle to me. I am particularly grateful for it, as I've rediscovered my love of books during this time. But my impulse control is not great, and I've caught myself closing my web browser just before clicking on the final 'pay for this now' button. Not horrendously big things, but stuff I don't need to be spending money on right now. Especially with $50 co-pays for medicines, $20 for 5 parking stickers at Hopkins (which have saved me a fortune - $4 dollars to park all day; my 7 hours of time in the clinic today would normally have cost $14!). I am frustrated at not having made more progress on the list of house projects that I created when all this began. I realized that if we stick with the schedule, I am halfway through treatment. I have heard from my boss that I will be welcomed back at work, and return as a new employee, but at least I won't have to go through orientation. I know I'm going through chemo and just need to give myself a break, but, well, social worker heal thyself. Dammit! And I know I'm forgetting a bunch of other complaints that I wanted to add to this, but hey - it's chemo brain! It's a tattered shield, but it's all I've got.
Speaking of chemo, there's been a change. I mentioned to the nurse that I'd had some pretty rough neuropathy after the last round that was affecting my feet (it's no exaggeration to say that I was 'hobbling' around the house for 4-5 days afterward) and hands with numbness, tingling, feeling cold when they're not, keeping me awake at night. The doc was sufficiently concerned that he has switched me to another regimen called ICE. It stands for Ifosfamide, carboplatin and etopicide. The last one I've been taking in the last regimen, the others are new. The steroid component has also changed: from being a prednisone derivative, it is now Decadron, a big improvement from a side effect standpoint. I can tell this already in the four hours since my first infusion today. Side effects from the regimen will be fatigue, maybe some edema, possibly some cognitive effects (most likely the light-headedness I feel at the moment, but it can cause confusion up to the point of delirium! I've left an envelope by my front door about what to do in the event I start acting even goofier than I do now! It specifically states that I'm not be sent to my own hospital unless Cheryl is on the treatment team!) Anyway, it's only three days in the clinic with this regimen and then a quick trip back for a shot two days later. I wasn't sure I was going to start this today, as I'd needed red cells as recently as last Friday - not uncommon, but a little disturbing since I was three weeks out of chemo at that point, and I felt like crap on Saturday. But Sunday I felt good and got the house mostly clean and the laundry mostly done. If we stay on schedule my last round will be the week before Thanksgiving.
I am glad of the change; it was hard to imagine two more rounds of ESHAP. ICE was one of my other choices at the beginning. I asked if maybe it would target cancer cells that ESHAP might have missed, and was told that this was certainly possible but there was no way to know that. So I'm going with that possibility, and I feel good about the switch. And I don't feel nearly so hammered as I did with ESHAP at this point, but there are two more days to go. It sticks in my head that there are other things I wanted to say here, but - surprise! - I can't remember them. But I have gone on at length, and this computer is located right in the path of the air conditioner - hey, it's in the 40's outside, turn the heat up!
Thanks to Jane and Don and Margaret and Linda and Suzanne and Paula - and Rich! - you are truly the best of the best.
Thank you Caroline and the curlie-girlies for lunch last week. They are adorable!
Thank you Cheryl for the cards, the good humor and the good vibes - can't wait to get back and bug you again.!
Thank you Karen for keeping Merle and Hal on a tight leash. Well, as tight as you can make it with those two. Evergreen soon?
Thank you Nancy for lunch yesterday and for letting my cry on your shoulder via phone the other day. I really needed that. Glad I could help with the computer.
Thank you sister Nancy - no she's not a nun, she's my real sister, best anyone could ever want.
Thank you Scott and Sandy for all your prayers and support. I may not be strictly church-going, but there is definitely something to the power of prayer. And just for you - a 'buy one get one free' offer for my "Chagrin Factor" seminars starting on Wednesday! ;-)
William, you are a rock. I know I don't need the medevac issues as an excuse to communicate, but I've enjoyed our phone calls. For you, I promise to call Barack and tell him to take it easy on you! I hope Ann got my reply to her email.
To the Jennifer/Robert/Steven/Daniel/Trevor/Taylor nephew Experience - at least it has better side effects than chemo! Now just what do I mean by that...
To Matt and Trista - congratulations on the new home! Now put everything away!!
And last but hardly least, to my Mother, who has been not just my rock, but my salvation: I hope you see this at an internet cafe on your trip. It's going to be great. I love you!
To Jared and Merle - thanks for just being you! We must get together soon.
To Gwen and Ernestine and Jennifer and Hal and Michael and Dale and Jay and everyone at work: thanks so much for all your support. It continues to mean a great deal to me.
And to my neighbors Margi & April - CONGRATULATIONS!!!! Way to go on the 2 for 1 special! Addison Kai and Avery Grace, born 10/22 in the middle of the night. They are so beautiful, everyone on the block can't wait to see them. Treasure your sleep now...
OK, time for me to get some dinner and head home for another round of post-chemo pills at 9:00. I didn't forget, Jane!
With much gratitude for your keeping faith with me, and even more love and affection for you all, despite my silence ~~~~~~~~~~
Cheers ~
Mark
Monday, September 29, 2008
Honey #3, with apologies to Cheryl
Between the party planning and the relatives (and the needed naps) I was unable to post from sometimes sunny, sometimes foggy SoCal. Helped my sister with last minute party plans when I got there and spent a good deal of time hanging out with Mom, who was very happy to see me. Us 'kids' took her out for a surprise dinner and cruise around Newport Harbor on Friday evening ( http://www.duffyboats.com/ - great fun), then had almost all the family (25 altogether) in to her house for dinner on Saturday for which she was not supposed to lift a finger, but being irrepressible she couldn't help herself. "Sit down Mom, we'll take care of it," was frequently heard, sometimes to no avail. That's her secret, she stays active and just keeps going. I'd like to be in her shape at 60, let alone 80. It was great to see everyone (except my nephew Steven who is up to his ears in classes at West Point - you were missed Esteban! See you at Christmas, maybe for the Army-Navy game.) It was a very nice break from everything that's been going on. We also celebrated my birthday too; received some nice presents including several books, I'm very happy. (Currently reading Geraldine Brooks' People of the Book - terrific, made the return flights go quickly.)
Hardest thing about the trip was the flying. Yes, I wore a mask. The flight attendants and my seatmates knew what it was about, but the rest of the passengers looked at me like I was wearing a turban and artillery belt. I chose to be amused. Flying has become an endurance test anymore, it's no longer fun. I flew Delta, which thinks that 40 minutes is enough time to make a connection in Atlanta. Yeah, if you're a track star. Just barely made my connection after the plane sat on the ground for 20 minutes before pulling up to the gate. I shouldn't complain; my luggage arrived with me in Baltimore (a miracle? You decide.)
An amusing episode while I was there, but first a little background. A few weeks ago Cheryl, unit secretary and Avon maven, sent me some samples of concealer for my 'Uncle Fester eyes'. Perhaps I put it on wrong - I've never actually done so before, but it didn't seem to work for me. Fast forward to Southern California: my sister and I are running around South Coast Plaza, Orange County's version of Rodeo Drive, and we're in Nordstrom's and as we're walking by the MAC cosmetics counter, I think, "Hmmmm, I'll bet they have concealer." So my sister and I go up and we are completely ignored by the half dozen haughty young women dressed in black with huge ... I don't know, make-up tool belts I guess, slung around their waists. So we move on after discussing their flaws. On the way out to the car we have to pass through Bloomingdale's and I say, "Let's try again." A friendly young man and woman (from other make-up counters) point us to the MAC counter there, where once again we are completely ignored by the same self-absorbed, cookie-cutter young women. My sister says, "The heck with them, let's go back to the nice ones," and we did. Once I explained about cancer, chemo, Uncle Fester, etc, the lovely young woman from Dior said, "Have a seat, I'll fix you right up." She tried two colors, which were close, but I didn't think they quite did the trick. The guy from Trish McEvoy, who was working over my sister, invited me over (the Dior woman, to my amazement, was completely understanding about this) and his assistant (a gorgeous Persian woman who could not have been sweeter) worked me over. The result? Eye cream twice a day (it works!) and Honey #3. I'm a happy man. Always wondered what it was like to sit in the high chair and have that kind of attention. It's pretty cool. But that will be the extent of my adventures in make-up. Sorry Cheryl; I'm sure Avon will have something else for me, though after you what else could I want?
In other news: I type this from the chemotherapy room on my new computer (Hopkins has free WiFi). The weekend before the trip the screen on my old computer went black, and the consensus was that it would have to be mailed back to Dell and would cost several hundred dollars to fix. Between time without a computer and the cost, plus it was over three years old, it made sense to buy a new one. I've had to have the Geek Squad make a disc of all the files I need off the old one, which I'll pick up today.
Here in chemo-land there have been some changes in the regimen: the methyprednisolone has been reduced by 50%, and the other chemo drugs by 25% as a result of the impact on my bone marrow and the rough side effects that have been lasting longer each time. This is not a bad thing, nor is it unexpected in treatment. As I type this, I'm about an hour from being set free and I can feel a difference. While I had great scans a couple weeks ago, they are not part of the reason for the reduction, though the scans certainly set my mind at ease about this. One day almost done, four to go.
That's all I have for today. Good to have traveled, good to be back. OK Hal, your vacation's over too, time to start harassing you again!
Cheers ~~~~~~~~
Hardest thing about the trip was the flying. Yes, I wore a mask. The flight attendants and my seatmates knew what it was about, but the rest of the passengers looked at me like I was wearing a turban and artillery belt. I chose to be amused. Flying has become an endurance test anymore, it's no longer fun. I flew Delta, which thinks that 40 minutes is enough time to make a connection in Atlanta. Yeah, if you're a track star. Just barely made my connection after the plane sat on the ground for 20 minutes before pulling up to the gate. I shouldn't complain; my luggage arrived with me in Baltimore (a miracle? You decide.)
An amusing episode while I was there, but first a little background. A few weeks ago Cheryl, unit secretary and Avon maven, sent me some samples of concealer for my 'Uncle Fester eyes'. Perhaps I put it on wrong - I've never actually done so before, but it didn't seem to work for me. Fast forward to Southern California: my sister and I are running around South Coast Plaza, Orange County's version of Rodeo Drive, and we're in Nordstrom's and as we're walking by the MAC cosmetics counter, I think, "Hmmmm, I'll bet they have concealer." So my sister and I go up and we are completely ignored by the half dozen haughty young women dressed in black with huge ... I don't know, make-up tool belts I guess, slung around their waists. So we move on after discussing their flaws. On the way out to the car we have to pass through Bloomingdale's and I say, "Let's try again." A friendly young man and woman (from other make-up counters) point us to the MAC counter there, where once again we are completely ignored by the same self-absorbed, cookie-cutter young women. My sister says, "The heck with them, let's go back to the nice ones," and we did. Once I explained about cancer, chemo, Uncle Fester, etc, the lovely young woman from Dior said, "Have a seat, I'll fix you right up." She tried two colors, which were close, but I didn't think they quite did the trick. The guy from Trish McEvoy, who was working over my sister, invited me over (the Dior woman, to my amazement, was completely understanding about this) and his assistant (a gorgeous Persian woman who could not have been sweeter) worked me over. The result? Eye cream twice a day (it works!) and Honey #3. I'm a happy man. Always wondered what it was like to sit in the high chair and have that kind of attention. It's pretty cool. But that will be the extent of my adventures in make-up. Sorry Cheryl; I'm sure Avon will have something else for me, though after you what else could I want?
In other news: I type this from the chemotherapy room on my new computer (Hopkins has free WiFi). The weekend before the trip the screen on my old computer went black, and the consensus was that it would have to be mailed back to Dell and would cost several hundred dollars to fix. Between time without a computer and the cost, plus it was over three years old, it made sense to buy a new one. I've had to have the Geek Squad make a disc of all the files I need off the old one, which I'll pick up today.
Here in chemo-land there have been some changes in the regimen: the methyprednisolone has been reduced by 50%, and the other chemo drugs by 25% as a result of the impact on my bone marrow and the rough side effects that have been lasting longer each time. This is not a bad thing, nor is it unexpected in treatment. As I type this, I'm about an hour from being set free and I can feel a difference. While I had great scans a couple weeks ago, they are not part of the reason for the reduction, though the scans certainly set my mind at ease about this. One day almost done, four to go.
That's all I have for today. Good to have traveled, good to be back. OK Hal, your vacation's over too, time to start harassing you again!
Cheers ~~~~~~~~
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