Time4a3MinuteEgg

Run over by a convoy of trucks

2011-06-11T19:47:00.000-07:00

A quick update: I was admitted to Johns Hopkins last Monday (6/6) and discharged today. Tons of antibiotics, etc but the care was the best I've ever had. I am exhausted and need to go to bed now, more soon.

scraping bottom

2011-06-03T16:32:00.000-07:00

So things have been gradually getting worse. I required platelets yesterday, and my neutrophils - essentially my immune system - are down to about zero now. I have to be super careful to not pick up infections, and we're monitoring my temperature around the clock. Any temp above 100.5 is a guaranteed hospital admission. Today they started me on Vancomycin twice a day; next dose at midnight. A two hour infusion that I'm doing at home. This is for some pretty rough mouth sores and sore throat that have developed that keep me from eating most solid foods. Cold things like smoothies, iced juices, tapioca, Ensures are pretty much the order of the day I manage to stay hydrated. I have a mouthwash that provides some relief, but not quite as much as some pretty strong pain meds. The upside, I suppose, is that there has been some loss of tonnage.
My energy is way down and most of the day I feel like laying in bed. Judy is here taking excellent care of me and we are having some good laughs. The hideous weather of a couple days ago has broken and it is beautiful, classic spring weather now (60's at night, low 80's during the day, breezy and dry). So that's a blessing. The great care at Hopkins is a blessing too, they never cease to impress me. More soon when my head is a bit clearer. Thanks all ~

The ton of bricks has arrived

2011-05-31T06:22:00.000-07:00

This morning the sun is already up and blazing, with a predicted high of 96. The air conditioners are already humming. One of the upsides to being in the clinic is not having to be outside. Today's appointment is at 1:30, later than usual. Last two days have involved 4 hour infusions of Tacrolimus (sounds like a kids movie villain). It's one of two immune system suppressants that I will be taking for the next six months or so to keep my body from rejecting the transplant (Republican marrow aside). In another day or two I will switch to pills and then my clinic visits will be @ 2 hours each, unless my counts are so low that I need platelet or red cell transfusions. Examples of my counts from yesterday with normal range in parentheses:
White cells - 1010 (4500-11000)
Hematocrit - 38.1 (41-53)
Platelets - 44 (150-350)
Neutrophils - 808 (1500-7800)
All of these are expected to get much lower, with some of them reaching zero, or undetectable. The neutrophils are the important measure in disease fighting, and now that I'm below range I have to wear a mask out of the house.

Side effects are now making themselves known in larger ways:
- mouth and throat sores, that are fairly well controlled with a salt and baking soda rinse. Becoming sensitive to citrus, spice, etc
- extreme fatigue that is amenable to naps. I can rally myself for some things like a brief trip to the market (mask on), watering the yard. Hard to get motivated.
- chemo brain! Hard to remember things fairly often, hard to remember where the lists are that I made.
- there's more, but I forget at this moment. Seriously.

Otherwise things are on track. Steve is here keeping me good company and being very helpful. Judy arrives on Wednesday night. I am behind in writing this and notes to folks, thanks for understanding. Please don't hesitate to call - early evening my time is best (6-9). Leave a message here, or email me at Mark21213@gmail.com. Thanks for all your support!

Tired Puppy

2011-05-28T18:54:00.000-07:00

Apologies for not writing recently, I have just completed two long days at the clinic getting my last chemo and a boatload of hydration. For some reason it wasn't leaving me as fast as it was coming in, so there was a late start to the chemo the first day which ended up being 13 hours long (sorry Mike!) Gained 12 pounds that day and after 80mg of Lasix, spent last night up and down, up and down getting rid of it. Lost it all too. Put on the squeezy stockings today (thank you Scott) which helped a lot and was out in just under 12 hours. Anyway, I'm exhausted so this will be short. I start the immuno-suppressive drugs tomorrow (Sunday) and the days will be much shorter so I'll have more time to write then. My butt has been officially kicked.
Thank you Nancita Bonita Cornchipchita for the divine chocolates and sauces ~ the nurses did confirm that chocolate is an essential part of the healing process.

It's Official!

2011-05-25T18:03:00.000-07:00

I'm neutropenic! Actually it's nothing to celebrate, it means that my neutrophils - the cells that fight germs - have dropped below the normal range. This is expected, and really not to be taken lightly. For the next several weeks I have to be super-careful about what I touch, breathe and eat. Any temp over 100.4 has to be reported to the clinic, even after hours. It will most likely signify an infection and get me admitted to the hospital PDQ. Hence the precautions. My dear friend Fred, who has done a tremendous amount for me the last 11 days, has shown me all that I need to know, and I am confident that I can pass it on to future caregivers.
Yes, I do look good and sound great. This will erode with time, but the important thing is to keep my attitude positive and moisturize moisturize moisturize. Or something like that. When I start really feeling like crap I promise to let you know. Meanwhile, I get to deal with the arrival of summer: 92 charming degrees tomorrow, ugh! Note to caregiver: bring light clothes. And cool San Francisco air.
My brother Scott arrived home safely today, thank you again and again. Sorry to be such a pain in the back! And thanks to John and to Jed for the beautiful flowers, they lifted my spirits a tremendous amount.

Day 0

2011-05-24T18:04:00.000-07:00

Done! The transplant went off without a hitch; I had no adverse reactions to the new marrow. My brother did well and will be on his way back to California tomorrow. Next comes two days of 'rest' though I will still report to the clinic each day for blood work. Friday and Saturday are loooong days, 12 hours each, with a little chemo and a lot of fluids. And that will be the last of it. Blood counts will recover over the next 3-4 weeks. Have I said all this before? Chemo brain, sorry. Anyway, I appreciate the comments about looking and sounding good, but please remember that my energy is paper thin and I'm highly susceptible to infection during the next few weeks.
Again, many thanks to my brother, Fred, Steve and those to come. More soon.

The Penultimate Day

2011-05-23T18:42:00.000-07:00

I've always wanted to use the word ' penultimate' and now I have the chance. Eat, drink and be merry for tomorrow we transplant! I have survived, with my dear friend Fred's amazing support, the last week of chemo. It's been rocky but I feel pretty good tonight. Let me correct a few things I've heard in people's well-meant words. It is my brother that will be in surgery tomorrow, though he will be, well, punctured rather than cut into. He will be under general anesthetic for a short period, and has some lovely pain medication to help him through afterward. The marrow will be taken up to a lab and fiddled with for 2-3 hours I am told, and then I will get it back in the clinic via IV infusion. It will look for all the world like an infusion of blood, rather anti-climactic.
I am not spending tonight in the hospital, though I wish I were - Scott has to be there at 5:30 AM. Apparently beauty sleep can be dispensed with for transplantation. [There is a whole line of jokes about a 'Trans Plantation' here in the South that I will spare you from.] I go to the clinic when it opens at 7:30. We will probably be home by 2 or 3 in the afternoon. This whole procedure is designed to be done on an outpatient basis, though there is a fair chance that I may have to be admitted at some point down the line for what's called a 'neutropenic fever.' Any temp over 100.4 has to be called in immediately and is a likely an infection due to insufficient germ-fighting cells (neutrophils). The upside to that is that the admission is immediate: I bypass the ER completely.
The bigger test, it would appear, is two more days of chemo on Friday and Saturday. An agent charmingly named Cytoxan, and yes you heard it right, post-transplant chemo. It apparently has no negative effect on the transplant. After that it's all recovery, though not without risk. My (blood) counts should return about 3 weeks after that, but there will be immuno-suppressive drugs so that my body doesn't resist the transplant. Lots of stuff managed (mostly) by smarter people than myself. My job is stay away from sneezy people and not eat things like sushi. And wash my hands all the time.
All that said I want to reiterate how grateful I am to you all for your kind words, prayers and warm wishes. Thanks to my nephew, newly minted Second Lieutenant Steven Moody, for stopping by in his Army uniform. Thanks to my future caregivers. I know that Dennis, whom I miss so much, is watching over me and that I am rich beyond measure in family and friends. Thank you all, from the bottom of my heart. More tomorrow.

Much to say -

2011-05-20T12:06:00.000-07:00

aI want to start by acknowledging family members today. My nephew Steven graduates from West Point tomorrow, a terrific accomplishment for which the Army will reward him with officer training in Fort Benning, GA and a post to Fort Hood in Texas. Congratulations! Now put the snowboard up on Craig's List. And another nephew, Robert, graduates from UC Irvine this semester as well. He has studied up on criminal investigation and now speaks fluent Spanish. He can also tell you about the best surfing spots in Chile. My niece Jennifer has just bought her first home (time to order more checks from the bank - welcome to home ownership!), and she works as a fundraiser for a Christian non-profit micro-lending group. Another nephew Taylor is working in the wine industry, brokering wine sales to restaurants and restaurant chains. As of July first this year you can finally send wine to an uncle in Maryland through the mail. And he might have a gathering of friends to taste those wines and give you some feedback. Just sayin' ... His brother Trevor is working and going to school and keeping my mother company at the beach in SoCal; he's great with kids, loves to run and crew (rowing a boat), still isn't sure what he wants to do. Dude: enjoy life, that's everybody's real purpose ;) Matt is a Christian minister in Greeley, CO and with his snappy wife Trista have produced my sister's first grandchild, the beautiful Samantha. How about another? And Daniel (the last shall be first...), also referred to as The Daniel Moody Experience is an E-ticket experience if ever there was one. He's a straight-up guy working and going to school and also helping out Mom. You could not ask for better relatives; I love you all.

As for moi, today was the fourth day of chemo. The side effects are starting to make themselves known mostly through fatigue and a couple little mouth sores. Overall it's been pretty tolerable, but the harder parts will come over the next couple weeks. My friend Fred is here now, helping me out with things. Since he is familiar with oncology, he's been keeping track of what I need to do, interpreting lab results, helping clean the house (sanitation will be the watchword for a while, primarily in the bathroom) and cooking (thank God!). While my labs look good - today - the cells floating around were produced by my marrow a while back, and chemo will prevent them from being replaced and hopefully remove all the cancer at the same time, hence the need for some fresh bone marrow. Transplant day is Tuesday the 24th, and shaping up to be quite a day. I have two days off from chemo before that, though I will have to check in for labs each day. My brother comes back down from West Point on Sunday and preps for the operation - he'll be under anesthesia - on Monday. Lots to prepare for.

In other news, Fred and I saw Morgan Spurlock's new film "The Greatest Story Ever Sold." Quite funny in parts, eye-opening, not quite as compelling as I'd hoped, but definitely worth seeing. Something else to mention: my employer is letting me go from my position. I am not angry, upset or surprised. The hospital is in great need of social workers right now and I cannot predict when I will return. My oncologist has told me the average time away from work is 6-12 months if all goes well. (Remember, even though the transplant procedure is not new, it still carries many risks, especially in conjunction with my HIV.) I feel confident that I can return to the hospital when they have a position open again, and if not then I can get good references from people there.

So, my spirits are good, my attitude is hopeful and I have terrific support from friends and family. I can feel the prayers, good wishes and warm thoughts coming my way and believe me that is no small thing. Thank you all - more will be revealed.

PS - Just in case any of you are taken up in the predicted Rapture tomorrow, can I have your stuff?

Her Majesty

2011-05-18T18:17:00.000-07:00

Somebody feels a little left out.

Longer Days

2011-05-18T09:32:00.000-07:00

Fred and I are in the clinic now, and I'm using a hospital computer (bad boy!) doing chemo for about 11 hours a day this week. This is not as bad as it sounds: the actual administration of the chemo takes little time, but they need to draw blood at certain intervals which is the real hold-up. One agent, Fludaribene, only takes about 30 minutes to administer by infusion, but the other - Busulphan- has to be taken about 12 hours apart. The Busulphan is so ... I guess toxic is the right word, that the pills cannot be touched, so I get them in little clear gel caps.

The side effects have been less than expected, but with chemo the real effects tend to show up over time. My energy will gradually diminish, along with my immune system. So far the worst of it is low energy, poor sleep and vivid nightmares. Fred has been a great help with asking the right questions and getting the house - especially the bathroom - set up for germ/infection control which will become more important as time goes on. Showering is a pain, with having to cover my Hickman catheter (picture of that to come soon too), but I'm getting better at self-administered sponge baths. Still, the next time I can shower without fear of getting the catheter site wet I intend to run the water heater dry. I'm pretty sure I've given myself my last haircut and I tug at my goatee every day to see if it's falling out (not yet).

We do get something of a break in the afternoons right now, with four hours off between 2 and 6. I found a movie that we can get to and from in that time - Morgan Spurlock's "The Greatest Movie Ever Sold" (same guy that did "Supersize Me") so we're going to hit that this afternoon. If all this sounds like more fun than not, let me say again that a lot of work is ahead of me. The transplant is 6 days away, and I will physically feel a lot different by then, and afterwards. A couple more days of being able to eat the lettuce growing on my deck (it's turned out beautifully, probably because the rabbits can't get to it), and it's far better than the good stuff in the markets. The purple carrots, green and wax beans, squashes, sugar snaps will all be ready when I am able to eat them again. The timing is great, but I'll have to find it all in the weeds since I can't get at those for a while. All this rain isn't helping either.

In the meantime, please join me in wishing my brother Scott a very happy birthday today (5/18). At the moment he's up at West Point for his son's graduation and will return on Sunday for the transplant on Tuesday. If you have any suggestions for a gift - other than my undying gratitude for saving my life - I'd love to know. He's impossible to buy for. Ciao for now ~

Waiting

2011-05-15T15:20:00.000-07:00

I want to say that I'm waiting for my first caregiver to arrive, which I am, but I also consider those who are praying / thinking good thoughts / and generally wishing me well as caregivers too. But Fred arrives from San Francisco in a couple hours and he will stay with me through the chemo and transplant process. He's one of the best friends anyone can have; and it's no small help that he's an oncology nurse. After that it's Steve, then Judy, Joe, another Joe, Danita. I don't know that I can ever repay these people, but I will always be grateful for their time and efforts, and I will be ready to do what I can for them should a need ever arise.

As for me, I'm anxious and a bit scared though I'm feeling much better after a long talk with one of the transplant docs while signing consent forms. I don't think I'll be as wiped out as expected, and the real work will be in things like wearing a mask whenever I leave the house and eating food that's been cooked within an inch of losing its flavor. No more salads or fresh berries no working in the garden. It's still a little surreal that the whole thing has arrived after 9 months of waiting. So here's what's happening: tomorrow (Monday) at 1:00 I'll receive a Hickman catheter while taking a lovely anesthesia nap. Tuesday starts 5 days of pretty intense chemo - goodbye hair, hello round fat naked face. It will come back. (Sometimes it comes back different: I'm hoping to be a flaming redhead after this. NO CATTY COMMENTS THANK YOU.)

After chemo I get two days of rest; they canceled the radiation, for which I'm grateful. Tuesday the 24th is transplant day. Yes it will be bone marrow from a Republican - if you see me with a Trump for President button, assume the worst. After that there are two more days of a chemo that won't hurt the new marrow, something called Cytoxan. Then we wait for my blood counts to return (about 1-2 weeks) and pray that I don't get a fever. A fever usually indicates infection and requires a hospital admission. They (my transplant nurse, the fabulous Megan) say pretty much everyone is admitted at some point. Another $500 co-pay, oy.

Otherwise summer is coming, we're now in the upper 70's with more humid days. Not so bad. The house is clean, the basement remains a disaster. Let the fun begin!

Good lord it's dusty in here

2011-05-10T07:10:00.000-07:00

"Once more unto the breach, dear friends, once more ..." - Shakespeare, Henry V, Act 3, Scene 1

or as Ronald Reagan put it, "There you go again."

Well, here we are again. Time to dust off the old blog and put it back to use. I am not going to repeat the Uncle Fester look-alike contest; if you want to see it, look in the older posts. Weeping, wailing and gnashing of teeth will (hopefully) be kept to a minimum. For those of you new to this blog, the name is explained in the first posting. I'm sorry for the rather dry clinical nature of this post but I want to break the ice (for me) about getting it started again

One week from today, Tuesday 5/8, a port will be placed in my chest. Chemo starts the day after and runs for six days; they have - as of yesterday - canceled the one-day of TBI (total body irradiation) that I was to get the day before transplant. There will be two additional days of a different chemotherapy starting the day after the transplant. And then I have to be super-careful for the following six weeks until my immune system builds back up.
My brother arrives tomorrow night for two days of testing at Hopkins, then his wife comes Saturday and they will drive up to West Point for their son's graduation and the week of festivities it involves. (We are very proud of Steven and I am very sad about not being able to attend.) He returns on the Sunday after that for a pre-op day at Hopkins on Monday, then transplant Tuesday, check-up Wednesday and he goes home that night.
Some folks have asked about where the marrow comes from and how it gets into me. The marrow comes from my brother. He will be under general anesthesia when it's taken, and the only two spots I know for sure it will come from are in the back of the pelvis: two bony protrusions that you can feel on either side of the spine, just at or below your waistline. They have told me there will be more places, I don't want to know. Scott won't know unless he asks, but he will definitely know when he wakes up. He'll probably get some excellent pain medication too. And he gets to come to Baltimore! I'll take him out for a good crab cake, refrain from mentioning he's in a blue state and he'll be fine.
My first caregiver, Fred, arrives on Sunday night and he will see me through all the chemo before he returns to San Francisco. My local friend Steve will fill in for several days, then my friend Judy comes 6/1 to 6/13. Then it's my brother-in-law (Dennis's sister's husband) Joe until the 20th. After that my friend Joe from California followed by my mother and then Dennis's sister. An all-star line-up, better friends and a better mother you cannot find.

That's all for now folks. Back with more soon, including what I think and feel about all this.

2009-09-14T17:46:00.000-07:00

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

2009-08-27T02:13:00.000-07:00

Hello? Anyone out there?

Finished! Finito! Terminado! Acabado! законченный! 終わった! ξοφλημένος! Befejezett! !مُنْتَهٍ Slut! (it's Swedish, I swear)

2008-11-19T17:26:00.000-08:00

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!

Sunday night

2008-11-16T18:50:00.000-08:00

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 ~~~~~~~~~~~~~~~~~~~~~~~~

Admitted-ly

2008-11-11T17:19:00.000-08:00

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 ~~~~~

A litany of ....

2008-10-27T14:56:00.000-07:00

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

Honey #3, with apologies to Cheryl

2008-09-29T09:42:00.000-07:00

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 ~~~~~~~~

Good to Go

2008-09-23T08:58:00.001-07:00

OK, my nadir is behind me. Not one word out of any of you...

My labs on Monday showed that I'm climbing out. All the numbers were on the upswing and in acceptable ranges for taking off today. I'll be in lovely Newport Beach, California, through Sunday with la familia celebrating mother's 80th birthday. I should live so long and remain so active! Happy birthday Mom!

I come back Sunday night, and start round 4 on Monday morning. There is some discussion on the treatment team about adjusting the regimen. They've already said it's likely the methylprednisolone will be cut in half. After this last week they're concerned about the impact on the bone marrow and may adjust the doses of other drugs as well. I am not nervous about this as the scans have already shown a great response. But we will do all six rounds. So, onward!

I'll be wearing a mask on the plane in both directions, and slathering myself with Purell. Should I add a turban to all this? Keep an eye on the news for panic-stricken passengers fleeing a Delta flight!

I'll try to post from sunny southern California. Cheers ~

Happy Autumnal Equinox

2008-09-21T18:21:00.000-07:00

Again, to paraphrase St. Barbara, Oy what a week I had this week! We (doctor, nurses, me) are wondering when I'll hit my nadir from this round. (The first person who says I reached it years ago will be slapped). Nadir means 'lowest point' and in chemo it means sort of the hardest impact from the chemicals as reflected in the blood work. It usually occurs several days after chemo stops. Weeeellll, things kept on going down this week. I received two pints of red cells on Wednesday, and two more on Friday plus two units of platelets. The red cells because my hemoglobin was 8.8 on Wednesday and not a whole lot better Friday, and the plates were 26,000 Wed and 16,000 on Fri. Platelets should be in the six figure range, and hemoglobin should be higher than it was I just don't remember right now. I'm on another antibiotic to be on the safe side. All of this is not unexpected. Everybody was concerned but calm about it. My nurse is available to me by pager this weekend just in case, and so far I've been tired but OK. Here is the complicating factor: if my counts are still low tomorrow (Monday) morning, they will recommend I not go to California the next day (for my mother's 80th). Maybe I can change the flight to Wednesday and still be there for the parties over the weekend. I'll know in about 12 hours.

Clearing something up: I'm not taking prednisone in my regimen, it's methylprednisolone. (Well excuuuuuuse me) But it's related, it's a steroid, I'm getting a hell of a lot and it's kicking my butt. And while I have plenty of butt left, in the next round they're going to cut the dose in half, so a little good news there.

And apparently the gods think I don't have enough to do. On Saturday my computer screen died. Since I have a 3.5 year old laptop, I'd have had to mail it off to Dell and the bill would have been several hundred dollars. Soooooo, I type this on my new HP. I can't transfer anything from the old computer so I have start fresh with this one. The old one is at the Geek Squad so they can extract my files; they can't do settings for some reason. The transfer program could do it but I need to see both screens to make it work. All this means a) that I have a new toy, and b) that I am missing about 95% of your email addresses. If you would be kind enough to send an email to me at mark21213@gmail.com I would surely appreciate it. And while we're at it, would you please send your address and phone (if you want); I'm finally putting my address book in the computer. Thanks!

chagrin, guilt, apologies, thank-yous, etc.

2008-09-18T15:44:00.000-07:00

I was told once that pain has a beginning, a middle and an end; when it hurts the worst you're in the middle. I am in the middle right now. Here's what happened: after the great scan results I had an extra week off and I focused on just about anything other than treatment. Thought I'd catch up when chemo started again. Instead my defenses developed some wear and tear, and the feelings that all my humor and moxie (it means courage and aggressiveness; nerve) were holding at bay came home to roost. It was a very emotional week, and chemo only exacerbates that. The smallest feeling blew up and became a storm, usually of tears, and there was little to do but ride it out. Chemo is very wearing, which is maybe why I've had such trouble describing it. While I've the grace of family and friends beyond anything I could have asked for, at the end of the day I am alone with this. I have felt old, vulnerable and scared. And I miss Dennis so much.

Some of you may not know the story of our meeting when I was last in cancer treatment. I just want to say that he took strong, sensitive, nurturing care of me and stood by me all those months until I was better. I would not want to put him through this again, but I'd sure love to have him around. He was the keystone in saving the mental, emotional and spiritual parts of my life at a time when I wasn't sure I could, even with all the other support. He taught me many things, and I do my best to put them into practice every day. He would not have expected anything near perfection from me, and I hear him too when everyone tells me, You're in chemo, it's OK.

So it's been a rough time, and part of the roughness is in coming here to the blog and confronting my reality. You all have been so kind in not bugging me about keeping up, and I know there are no expectations on your part that I have to live up to, but it's just me. I have a habit of falling out of contact with people and the longer I take to get in touch the more I feel I have to write. What, you thought I was some paragon of mental health? I do feel that it sets up some expectations in establishing a blog (please, can we find a nicer word than that?) and I feel bad about not posting for so long. As St. Paul or St. Augustine or someone said, That which I would, I do not; that which I would not, that I do. Augustine also said, O Lord, help me to be pure, but not yet. Well, life as it is. I will endeavor to carry on with this on a more regular - and frequent basis.

Onward: a very big thank you to my red state (on a blue planet :-)~ brother Scott for his care package which included this -

Very, very sweet, a nice surprise, it lifted my spirits (now where did they go?). Lots of things to keep me busy and, in theory, out of trouble. For you, my brother, I'm sending away to Alaska for something special. Do you prefer mild or spicy moose jerky? I'm told it's great with ketchup.

Thanks to Martha and Rob for mowing the lawn (bless you, there is no way I could do that right now), the Venerable one for being venerable, Steve for the herbs o' Provence (among other things), to Hal for being such a good sport (Jesus really does hate the Yankees), all of my wonderful neighbors Paul & Martha, Margi & April (and Abercrombie & Fitch - girl, we got that bed-rest thing down, Tony & Joe, Vanessa & Patrick, David & Leon, Pat & Jae, and the fabulous Velma. I have so many people to thank that this page would be a mile long if I named you all. But it's getting late and I should talk about one or two other things.

Physically it's been very rough this week. It's bone marrow suppression caused by the chemo, not unexpected. I got an infusion of red cells two days ago, and am going tomorrow morning to see if I need more, as well as needing platelets - that count was very low today. I've extremely tired, and most of the time I feel like lying down. If I could sleep I wouldn't mind it so much. By the way, got 7 hours last night, first time in 9 days. I've been averaging 3-4 hours a night, not good. My head is a sieve. And the worst of it is, a little too often a song occurs to me that gets stuck. At the moment it's the theme song from Attack of the Killer Tomatoes. Do not listen to it! It's awful.

Lord, I'm becoming my own patient. Time for a pill of some sort. At least I don't have puffy ankles, so you're off the hook Hal. And besides, Jane said she would help hold them up. I guess male and female nurses really are different. More sooner rather than later. I love you all.

Cheers ~

Whoa, P S ~

I just read my comments, and the fabulous Jane my nurse was here. The best honey, really you are.

And I should mention that I'm about a billion emails behind, but since I'm largely sedentary these days; I'll get to them!

And Aaron, shouldn't that read chunky? Miss a key? ;-)~

YEEHAAAAA

2008-08-29T12:03:00.000-07:00

From the PET scan results:

Lymphadenopathy in the mediastinum [chest] is markedly decreased...

Impression: FDG PET/CT scan demonstrates marked response to therapy ... marked decrease in size of masses in the supraclavicular region, mediastinum, spleen and retroperitoneum [I have no idea where that is]. There is no evidence of viable lymphoma on the present exam.

From the CT scan results:

Impression: Mildly enlarged mediastinal lymph nodes ... these are moderately to markedly decreased in size since prior study. Previously seen mildly enlarged lymph nodes are markedly decreased in size with no residual significant intra-abdominal lymphadenopathy.

Or, as Don my nurse practitioner put it, "You've had an excellent response to chemotherapy."

So what does this mean? It's very good news. It means the cancer is highly responsive to chemotherapy and probably will continue that way, so more chemo might be the answer. Actually it probably is the answer. While the scans are good, they don't pick up the tiny little traces that may - or may not - still be there. My oncologist was out sick today, so I didn't get to meet with him, but Don and I talked about options. One is to do more of what I've been doing. He thought that I might do six rounds altogether (that's four more rounds), or that I might switch to another regimen. We discussed the mini-transplant (a form of bone marrow transplant) which would take some effort to put into place, most notably finding a donor match and getting the insurance company (Optimum Crap - I mean Dismal Choice - my subsidiary of United Healthcare) to pay for it. But at the moment chemotherapy alone seems like a pretty good option, holding the mini in reserve, a Plan B if it's necessary in the future.

So, trying to get a handle on the time frame, it looks like treatment will continue for the next two months or so, with scans happening about 60 days after the end of treatment to see where things stand. And it looks like the timing is right for a brief trip to be at my mother's 80th in California.

I will add more to this later, but wanted to put the good news up since I've neglected posting recently. Cheers ~

I DO NOT LOOK LIKE .....

2008-08-21T18:31:00.000-07:00

So Joe and Tony come over, with lasagna from Trinacria's, and the first thing I hear is, "You look like Uncle Fester. " One for you Scott. They wouldn't buy Mr. Clean.

OK boys, the lasagna was excellent, thank you so much, and the cookies put Vaccaro's to shame. It was good. Thanks for turning me on to Trinacria's (another name for Sicily).

The most amazing thing happened on Wednesday morning - I woke up feeling like a human being again. The fluids on the prior day did the trick and I got at least 6 hours of solid sleep that night. So it seems the worst of the side effects are over, but I still have to remember that I have a lot less energy than I feel. My friend Marty took me to lunch today (thanks Marty, that was a blast, let's do it again when you get back from the Vineyard.) Yes, Marty's going to Martha's Vineyard - tsk, tsk, envy is not pretty folks. Anyway, the point of this is also to say that it was nap time after lunch, it tuckered me out. Things will get better.

I gotta say, I keep rubbing my face, it still feels strange without hair. I didn't think I'd mind it being gone so much, but I really feel naked without it. No Scott, put a bag over yours. Cheryl!!! It's an Avon emergency!!!!!! Especially those dark circles under my eyes.

Cheers everybody ~ ~ ~ ~

2008-08-19T18:21:00.001-07:00

To quote the immortal Streisand, "Oy, what a day I had today!"

OK if it went unsaid Sunday I will say again today: the last four days have not been pleasant. I spent most of them in a horizontal position (i.e. in bed) as it was the only place I could feel comfortable. Standing or sitting made me feel a little dizzy, a little off balance, and just plain tired. In bed I at least was able to concentrate enough to read. For the lay folks, this phenomenon is called orthostatic hypotension; it basically means that I didn't have enough water in my body. So I called my nurse, the fabulous Jane (fresh off yet another vacation), and told her what was happening and she said to come on down, they would pump me up. And so I did, and they did. Better tonight, but still pretty wiped out. The good news was that my blood counts were all good, I'm not anemic which is what I feared. So a little more salt, a lot more fluids. I was drinking, I really was.

I feel like the tide came in and then went way out. I don't think I've mentioned my little water retention episode over the last week. Last Tuesday when I went in for chemo my weight was about what I expected. No, I'm not going to tell you what it was, but it was at the low end of the 30 pound weight loss that occurred before chemo started. On Wednesday I was up 8 pounds, but not alarmed 'cause the puffy ankles were, unsurprisingly, coming back. On Thursday, up another 10 pounds. Even after peeing twice from the Lasix, I was up 3 more pounds! 21 pounds in 48 hours!! That got some attention, and they gave me Lasix to go home with. The next day (Friday) they drew labs on me, and found that my potassium was low, so I had to stop the Lasix and start on a potassium supplement (and what a horse pill that is).

So I kept my feet up all weekend, no thanks to Hal, and all the excess fluid has gone away, and then some. On the scale today I was about 5 pounds under where I had started a week ago. I think I'll just get some muu-muus and be done with trying to figure out what fits. Otherwise I have no news, except to say that I think things are finally on the upswing. Looking ahead though, when I talk with Dr. Ambinder next week there will likely be a change in chemo regimens. The nurses did say that what I'm on can be rough and I have to remember that I was on it when I was 9 years younger and in better shape. (I'm in a good shape now - the pear shape is traditional, don't you think Joe P?) But I only did two rounds of it then; if this round is twice as hard as the last one (and it is) then the prospect of another round or two is pretty daunting and I'm not sure how I would survive the side effects. There are other regimens available to me, this should not be a problem. More will be revealed.

Gracious and lovely thank-yous to:
Linda (who is so much more than) the phlebotomist, and her able assistant Rayna (sp?) - always to good to hit it on the first try. I knew you could do it Rayna.
Paula, nurse extraordinaire.
John, for the wonderful gift basket. As soon as I feel good enough to appreciate pampering myself, it will be put to good use.
McDonald's - the Filet-o-Fish were good today. (For those not in the know, I usually have a food craving during chemo; last time it was Caesar salads). Hey I can eat salt again. Yes mother, not too much.
To my niece Jen for asking me a great question that deserves a considered answer; I haven't forgotten you, I wanted to finish the book Mom sent and then respond when my head is in reasonable working order.
To Jen K at work, for the chicken Kluski - I Googled the name and your secret's out!
To Karen at work for keeping Merle and Hal somewhat based in reality. Really Karen, you can smack Hal at any time, not that it helps, but you'll feel better.
And to Hal for making right choice: we all know that his kids come before my puffy ankles. I don't think they should, but everyone else does, so I will cave on this one. But just this once.

Onward and upward! Well actually, to bed. Cheers ~ ~ ~

Still here!

2008-08-17T12:49:00.000-07:00

Well I was going to title this, "They're baaaaack" but they're going away now. Must I mention that 'they' are puffy ankles? Boy oh boy, what a ride this time; I was right - it gets harder. I'm doing OK with it, but no energy, trouble sleeping, and just plain feeling like having been hit by a truck. As I've tried to describe before, it's like being scrubbed out from the inside, like you might do to a car radiator. Not a bad metaphor if you think of all the gunk that comes out of an old radiator being essentially what I'm trying to get rid of. My body, especially my abdomen has a metallic feeling to it, the touch-equivalent of a metallic taste in the mouth (which I also have). BUT, I've gotten some good sleep this morning and afternoon, the tides in my ankles seem to be going out, and the weather (even though I'm inside) is glorious. [For those keeping score: it's in the upper 80's with a good breeze and low humidity. Temps in the 60's at night. Fall is almost here!!!]

I'm pretty well laid out this weekend and have spent the better part of today (Sunday) in bed. I really don't feel like writing, but this is so far behind that I have to put something in. And, of course, once I sit down and start the hands take over. Writing is often less a head thing than a hand and arm thing.

The next steps: So I've been talking with my oncologist's nurse practitioner. No, not the lovely and ever-vacationing Jane, but the tall, thin Don who seems unruffled by just about anything. I had thought that once they pulled the IV lines out of me from my chemo that it was largely done with it's work. "Not so," said Don. (Did I talk about this in an earlier post?) The chemo continues to work for a while, so scans will happen a week later than I thought, on Wednesday the 27th. I see Dr. Ambinder on the morning of the 29th for results. Don has been talking about other treatment options that may result from the scan results. One option is to switch to other chemo if the current regimen appears insufficiently effective. But it sounds like - and "sounds like" is the operative phrase - I may have other options if my response to current chemo is good. But Don is also good, very good, and doesn't say much about what that might be, not wanting to get my hopes up I think. SO, more will be revealed on the 29th. Until then I get to rest a whole lot more and build up my strength again. More reading - thank God my concentration and retention seem to be OK, maybe a movie and puttering around the house. Lots and lots of little projects around here. This might be a good time to set up a betting pool to see just how many I get done.

I guess I should say that a lot may rest on the 29th. I have been planning to attend the 40th anniversary of my mother's 39th birthday later in September, and I have been hoping that successful treatment the first time around will ensure a return to work near the first of the year. I get to live in the moment for a while. But which moment ... the one where Merle takes me shopping? the one where Hal comes over and profusely apologizes for not helping out with my puffy ankles again? The one where Cheryl and I accost random strangers on the sidewalk and give them Avon make-overs?

Round 2, same as before...

2008-08-11T17:28:00.000-07:00

... a little bit harder, same chemo as before. Well my nurse, the lovely Jane, is off in California again during my treatment. I mean really, where are her priorities? But I had the equally lovely and also formidable Margaret overseeing my care today. The day can be summed up by reporting that she threatened to cut my fingers off if I touched my infusion machine one more time. (I learned - looooong ago - where the 'mute' or 'silence' buttons are on these machines. This time around I've learned that mostly they go off if I bend my arm a certain way and it backs up the line. If you hit the 'resume' and 'enter' buttons it turns the damn thing on again.) But the machine didn't go off that much today, she just caught me at it one time. As I value my fingers, I let it go after that. Margaret is wonderful, and fierce when she needs to be. I have to say that the nurses are really, really great there, and it's a shame we all can't go out for cocktails when chemo's done.

So here I am tonight, a little spacey from the methylprednisone, but otherwise OK. Laundry's done, clothes are washed, the upstairs is clean (I'll push myself to do the downstairs tomorrow - just vacuuming, it's that time of year for the cat, who for some reason isn't so keen on being combed and having the hair she would shed anyway taken off. If I don't keep after it, the hairs gather into... cat bunnies I suppose, but about the size of tumbleweeds.) Wow, I'm more spacey when I sit down than when I'm doing things. No, this will NOT become a habit.

AND I have chemo brain - which, as I've probably explained before, is a side effect that includes memory problems (no Scott, it's not from getting old - and you're not that far behind me), and various mild cognitive impairments. I gauge where I am with it by playing Free Cell on my computer, and now by playing the Rubik's Cube games that Danita and Joe sent me. Those folks are Dennis's (my late partner) sister and brother-in-law. I should explain that it's a stationary cube, the sides don't move, but the center squares light up in different colors that you have to press in various orders at increasing speeds in six different games. They also sent me a harmonica with a little book of instructions, so if you get a phone message with someone playing harmonica badly, it's likely me. They also sent chocolate which was excellent. And pictures of the granddaughters, also excellent. Kids growing up, just amazing. Anyway I was writing about chemo brain because I had suddenly drawn a blank about what to write - sometimes that's how the process works.

Shout outs:
To Mom - The book came today and it's next on the list. Thank you.
To Joe and Danita - Thanks for the care package and more importantly, the love and care.
To Margaret for leaving my fingers attached.
To Jared and Merle for taking me to Chameleon, it was yummy, thank you.
To Mike and Chick (and Hugh and Mark) for the wonderful dinner and for the child therapy - kids growing up just amazing.
AND TO VLADIMIR PUTIN - GET YOUR DAMN TROOPS OUT OF GEORGIA, NOW!!!! WHAT YOU'RE DOING IS WRONG AND YOU KNOW IT.

Cheers to everyone except Putin who gets a couple of good slaps upside his head - Cheryl can you make some calls about arranging that? I'm sure I can get one of the docs to write an order for it.

Where's Marko?

2008-08-09T17:13:00.000-07:00

The following is sung to the tune of Baby Baby Where Did Our Love Go? by the Supremes:

Baby, baby, baby, don't leave me
Oh, please don't leave me with a barren face

I've got this burning, burning, chemo feeling inside me
Ooh, deep inside me and it’s a makin’ me bald

You fell off my face (baby, baby) so tenderly
and now my chin (baby, baby) and upper lip everybody can see
(baby, baby)

Now that I surrender (baby, baby) so helplessly
You wanna leave (baby, baby) me all naked and shiny
(baby, baby)

Ooh, baby, baby, where did my hair go?
Oh, don't you want me (baby, baby) don't you want me no more?
(Baby, baby) Ooh, baby
_________________________________________

Yep, it's that time. Half my goatee had fallen out already - actually it doesn't fall out, it gets thin and brittle and breaks off. So off the rest of it came this morning. My friend and co-worker Karen met me for coffee this afternoon and was like, "Something's different about you..." I'll grow it back, I think I look a little jowly without it.

Went to work to see my co-worker Michelle off, she's moving on to greener (i.e. mo' money, mo' money) pastures. She trained me when I first got there and is smart, sweet, very cute and I will miss her a lot. You go girl! And stay in touch.

It's been a good week, nice to feel well and have a fair amount of energy to work with. My friend Nancy (3 minute egg) and I went to dinner and a movie on Friday night. Really, she's the best date in town. An early movie, something intelligent to see at the Charles, and tapas next door afterward with great conversation. We saw a terrific movie, The Edge of Heaven, from Germany. Highly engaging, great acting, interesting plot, it assumes the audience is made up of thinking adults. We gave it 'two thumbs way up' and talked about it all through dinner. It's not for everyone, but if you like European films and don't mind subtitles, it's probably one of the best you'll find in that category. I predict an Academy Award nomination for best foreign film.

This weekend is being spent cleaning house, doing laundry and generally preparing for chemo next week. Same thing, Monday through Friday. Next weekend will be probably be a write-off like it was the last time, but I will likely be more cautious about venturing out after that (round 2 is a little harder than round 1). Scans are going to be a week later than I thought: they'll be done on 8/27 and I'll get the results on 8/29 from the doc. I had thought that chemo runs through your system and is done with its work by the time I get home. Nay, nay said my nurse Jane, that is not so. Apparently it keeps working for a while. Fine by me. I've had no fevers, the B symptom (secondary effects of cancer) that led to the diagnosis, so it must be doing something.

Gratitude list for today:

Thanks Mom for your prayers and help with things. You're a trooper in your own right and one of my role models in all this.
Thanks Danita and Joe for the care package. Warning to everyone: among other things, they sent me a book and instructions for learning the harmonica!
Thank you Lisa, Paul & Martha for the deeeeelicious food y'all brought by.
Thanks Nancy (sister this time) for the Target therapy. Is walking the big square isle in Target good for the soul? I don't know that I can become quite the devotee you've become, but I'm working on it.
Thank you Thank you Thank you Paul & Martha for mowing the lawn! I will mow yours in the
spring.
Thank you Jared for helping me with the bookcase; and to you and Merle for taking me to dinner. Yes, the beach!
Thank you to my co-workers for all the hugs and good wishes Friday at Michelle's going away party. Thank you Dr. K for your kind support and gift of Bollywood films - I can't wait to watch them. Maybe I'll take them to chemo and turn the sound way up!
Thank you Miss Cheryl for the cards and pictures of my girls at work; there are no finer women. Oh, and Cheryl - if there's anything that Avon can do for that picture above, hit me up!
Thanks to the Powers that be for the divine weather right now. Mid-80's during the day, upper 60's at night. Fall is in the air. And the crickets at night.
Thanks to everyone for the prayers, support and kind words.
Thanks to my kitty, the fabulous Miss Autumn, for her companionship and for bringing me the "crunchy bug" (it's a sort of mouse substitute that looks a little like a bug and has some crinkly material inside - I just like the u sounds in 'crunchy bug').
And a thank you to Hal, for inquiring about my ankles, which were puffy again for a few days during the week. Had you come over to hold them up, this thank you would be up there by Mom's. And yes, I was wearing pants, well gym shorts (no, not "tighty whiteys" - my tightys are not whitey) in the picture above. As it's chemo week, my ankles will probably be puffy again. Should I leave a key under the mat?

Cheers ~ ~ ~ ~ ~ ~ ~ ~ ~

Hmmm, puffy ankles again

2008-08-06T19:04:00.000-07:00

Well thank God I put my modeling work on hold, it would ruin my career if showed up with these ankles. They're not so bad this time, but yes Mother, I will call the nurse tomorrow if they're still snuggly soft. OK, that was gross.

It feels like I didn't do a thing today. I did go out to Starbucks and try to write for a while. Ended up mostly revising, but that's OK, I have some of that to do too. It gets me closer to writing, if nothing else. Alright now, on 3, a big collective groan - Oh God he's going to talk about poetry. 1, 2, see how you are.

OK, fine, I also watered the garden and re-ordered prescriptions. And ate the fabulous dinner Lisa brought over. What's the emoticon for kiss? And I re-filled my pill boxes. What if the plural of that was 'pills box'? Yes ladies and gentlemen, you can be goofy during chemo, there is no law against it.

Yesterday I took the cat in for her annual check up - and I didn't need any stitches afterward! She got me with one good swipe though. She didn't sulk long, mostly it was a forlorn look and the Meow version of Why? Why me? I hope she's as grateful as I am (seriously) that she's in good shape and we don't have to go back for another year. I hate to think of the shape I'd be in without her.

I was going to write about prior cancer diagnoses, but now it's late and I don't want to. A poem instead - oh just try it, you might like it. It was one of my first published pieces. This came from an infusion early on in treatment. The afternoon with Mrs. Ong was really sweet, all things considered.

Mrs. Ong

Her skin is strong and supple
for her age, the veins easy to find.
She’s not really afraid of the pain,
but closes her eyes and sucks in her breath
when the needle comes near. She endures
the stick with a stiffened posture.

Later when the vein swells up
she rings her bell for the nurse.
Too much blood, she says laughing,
pointing to the embolism, too much blood.

Yesterday’s units have returned her color,
but maybe they gave too much.
She puffs out her cheeks like she’s been over-inflated,
her eyes a playful umlaut over the joke.
She shakes her head as the nurse
prepares a new needle. All this fuss.

Later, the nurse tells me that Mrs. Ong
designed and made the hat she wears,
and was once a famous designer in Peking.
She escaped China with her husband,
a famous movie director. Now she lives
in the Richmond, comes up the hill
for infusions just like I do.

Today we sat together, reduced
to being patient with our suffering,
ringing bells about our needs.
I silently agree with her:
it’s not the pain we’re afraid of
but the idea of it. It’s not the blood,
it’s getting too much.

Some of you have seen this with more and shorter lines; after the conference on revision in June, I'm in a tinkerin' mood. I've written one piece since this diagnosis, but it's not ready yet.

Cheers ~ ~ ~

What have I been doing?

2008-08-04T17:24:00.000-07:00

I have a small collection of quotes, aphorisms, advice, etc. on a variety of subjects that I've collected over the years. Under 'Adversity' are, among others, these:

… the most extreme conditions require the most extreme response, and for some individuals, the call to that response is vitality itself. … The integrity and self-esteem gained from winning the battles against extremity are the richest treasures in my life. - Diana Nyad

Think lucky. If you fall in a pond, check your hip pockets for fish. - Darrell Royal

One calamity is better than a thousand counsels. - a Turkish proverb

These were so true the last time, and they are more so this time. I guess that's a function of age, and maybe growth. The first person that calls me mature will be smacked!

I have realized that a great deal of my social needs have been met at work. I've realized (as I've said to some of you) that I spent all day talking to people and came home most nights wanting quiet time. Now there's no conversation for the better part of the day, so I've been spending time with folks when I can (thank you all!), and I have a renewed appreciation for real conversation. My neighbors are bringing me wonderful food (thank you Jen and Lisa and Margi and April).
I've been catching up on reading too. Just finished Channeling Mark Twain, a novel by Carol Muske-Dukes, a favorite poet. Story about a young woman teaching poetry at the women's prison on Riker's Island in New York, set in the early 70's. Slow start, but it hooked me and I loved it at the end. Am in the middle of two sets of short stories, Jhumpa Lahiri's Unaccustomed Earth about various Indian immigrants and their children; and Irish writer William Trevor's collection The Hill Bachelors. Both are masters of setting tone and establishing the characters in their environment. Lahiri (who also wrote Interpreter of the Maladies and The Namesake) is a master of the sentence and paragraph. Her work is so good, so rich that I'm reading it a little at a time. I've also been reading former poet laureate Ted Kooser's books. His poems are generally short but there is not one extra word in them. His work reflects all the brevity and flintiness of his mid-western roots.
I've just picked up Garrison Keillor's Pontoon, a very funny novel set in the fictional Lake Woebegone. On deck are Geraldine Brooks' People of the Book, and Diane Ackerman 's The Zookeeper's Wife. I have stacks of poetry books to choose from, it's probably time to hit Mark Doty's Fire to Fire, his recent 'new and selected' poems, as well as pulling out the few William Stafford books I've managed to find over the years.
My friend Karla told me that when she's in difficult straits she turns to mysteries and crime novels - books that in one way or another proceed to a conclusion / resolution. She recommended the Harry Potter series to me, something I've not read yet. A little dark, yes, but also easier reading if I'm feeling lousy. I will make a used bookstore run soon and pick that up just in case. When feeling better, I'm thrilled to have the time to read for a while (but I'd still rather be at work than doing chemo).
I'm relatively good right now, though my energy level is still down. I'm able to run errands without too much trouble, but I still run into my limitations. If I can build in some sit-down time I can stay out longer. The week ahead will be good, but I have to keep in mind that one reason for the break is because chemo is a good whack to the immune system (as my blood test last week showed). Another blood test on Friday, then chemo starts again on Monday. I'll use my good energy to clean and get ready for being laid out the 10-12 days that start then.
After this next round of chemo I'll get scans the following week that will tell if the chemo is working or not. If it is, onward. If not, plan B, and yes there are options for plan B. I'm also using this time to get to projects around the house. And the annual kitty drama: tomorrow Autumn goes in for her annual check-up. She's never happy about it, but she doesn't extract revenge either. And so far, all the canned food I bought for her she likes - if you own a cat, you know what an accomplishment this is. She seems happy to have me home during the day, and shows that appreciation by sleeping through the better portion of it.
OK, 10 pm, time for a few pages then bed. Several have asked about my prior times in treatment, I'll do that tomorrow too. Cheers!

Insomnia 4, Mark 1

2008-07-30T13:35:00.000-07:00

"innocent sleep,
Sleep that knits up the ravel'd sleave of care,
The death of each day's life, sore labor's bath,
Balm of hurt minds, great nature's second course,
Chief nourisher in life's feast-"

Wonderful lines, I'm afraid they're from MacBeth (Act 2, Scene 2) where the poor old Thane of Cawdor is suffering from insomnia himself. And Mrs. Thane of Cawdor is being no help at all.

Six, count 'em 6 hours of sleep last night!!! From a good, old-fashioned remedy, chloral hydrate. Thanks Dr. H! Yes, it's the old stuff referred to as a Mickey Finn, and it works. Will use it for a couple nights then save it for the next round of chemo. I was told that the methylprednisone in my regimen was responsible for it to begin with, but that should have passed out of my system by Saturday. Since I'm getting so much rest and have had so little energy maybe I didn't need so much sleep at night. But it's frustrating being tired and awake and squirrelly at 1:00 am. I play a game on the computer called Free Cell that I play once in a while; there's only so much of it one can tolerate in the middle of the night.

A little better every day, a little more energy and a clearing head. Have spent the whole afternoon awake, with a little help from coffee, finally able to start writing thank-you notes that make sense. A couple nights ago my neighbor April from across the street showed up at my door with a small casserole and salad and dessert. Two nights later she came by again, this time with a schedule of half a dozen neighbors who are going to take turns bringing me food twice a week. Jen at work is bringing me her famous lasagna tomorrow evening. I continue to be bowled over by the amount of support that is coming to me. Blessed, lucky, fortunate - call it what you want, I am just grateful beyond words.

Like a lot of folks, I'm more comfortable giving than receiving, and it's hard for me to ask for things. But I'm getting used to it, and asked my friend Mike to do the one thing my nurse has told me strictly not to do: clean the cat box. It was a relief to get the request out, but I'd much rather have done it myself.

OK, there's a terrific thunderstorm blowing up outside and lightning is striking within half a mile, so it would be a good idea to shut the computer down for a while. No rain yet, but I hope it comes. Perhaps more later. Cheers!

Bad writer, no post yesterday - and puffy ankles!

2008-07-27T16:59:00.000-07:00

Yesterday was for shell-shock. The chemo really messes up my sleep, and I didn't get to sleep until 2 am the night before, and 3 am last night. I'm making changes in meal time and sleep medication tonight, so we shall see. It was hard to hold a thought in my head for more than 5 minutes yesterday, and I spent a large portion of it laying on the bed wondering how I could amuse myself while keeping my feet above my head. No Hal, it was about having puffy ankles from the edema caused by chemo. An ongoing problem.

Am having to re-learn some basic lessons from the last time in chemo, and I had to put myself through them again this morning. Get up, drink coffee (or something) and try to wake up as much as you can, shower, shave, brush your tusk, make the bed, make a list of what can be done that's manageable. Small things, things I can rest between. Otherwise I roam the house focused on myself and how crappy I feel and that is not helpful, or I sit in front of the computer as bored as I would be in front of the television. I am managing to retain what I'm reading, which brings some pleasure, and I expect to be catching up in that area. Lord knows I have plenty of books.

I've been asked what chemo feels like. At this point it feels like the day after your worst day with the flu, times about ten. That 'hit-by-a-truck' feeling but it won't quite let you rest and there just aren't quite the right meds to make it go away. It feels like I've been scoured out like a car radiator, and the inside of my skin is raw in a more mental than physical way. I feel like I've been suddenly taken sideways from my normal life and put on a track that's parallel to everyone but not the same. Hard to describe, but my head is not in great working order; will keep at it.

In the meantime, now that I'm home with Autumn, I am treated to 'Kitty Opera' a couple times a day, not just at 4 am. Kitty Opera consists of much dramatic meowing usually from the living room, followed by a racing dash up the stairs, often with a small cloth mouse-like creature that gets deposited at my feet. For this, much praise must be lavished. No Hal, I am not the one racing up the stairs with the fake mouse, it's the cat.

Anyway, things will improve, it is expected that I feel (physically) the way I do right now. I may be tired and frustrated (He may be weary, chemo patients do get weary, wearing the same shabby ... oh never mind), but I'm not down. So cheers!

PS - I thought about posting a picture of my puffy ankles, but as I have not seen puffy ankles in the fashion magazines, perhaps they are not in style just now. So you are spared.

Chemo - Day 5

2008-07-25T17:59:00.000-07:00

First things first: the crickets came out last night. Their sound was high and soft and it was very comforting; Dennis found it the same. Makes me think summer's almost halfway over and fall and cool weather are not so far off; at least it's been less humid this year.

Day 5: On the upside, it was less than 3 hours in the chair, no alarms from the IV pump, same wonderful staff. On the downside, they saved the butt-kicker for last. Good thing I only get this on one day out of the five. Oh, and Lasix - spent the afternoon with feet up again, mostly taking a strangely comfortable afternoon nap under the fan. I suspect I will be spending a fair portion of the weekend with them up. It's all manageable and it will pass. Glad to be done with this week, now two weeks off during which I expect to gain back energy and be more social.

Thanks for keeping up with me. Your tired puppy signing off. Cheers!

Chemo - Day 4

2008-07-24T17:18:00.000-07:00

Well I think that about says it all. I have to give credit, it's a card available from www.caringpath.com
Inside it has the same guy, bald, saying, "Yep, it sure does. Hang in there." Some of their stuff is amusing and worth checking out. Wish they made a t-shirt with it, I'd be wearing one.

I'd say it was the same thing all over today, but not quite. It was one of those days when the damn IV pumps just won't quit going off. Despite hitting a good vein, I could not move my arm without setting it off. Kinks in the lines, getting up to use the bathroom, trying to read or write. They moved the line to my other arm, same thing. I finally gave up and just laid there, listening to women on The View drone on and on about plastic surgery. Then they gave me a Lasix shot to help with my fat ankles. I first heard about Lasix years ago when my father was taking it for similar reasons. Back then he told me that it was the drug they gave to racehorses right after races to make them pee so they could drug test them. It works. Didn't have to cry me a river today, just stood up and, well, never mind.

Tired tonight, no surprise. Tomorrow is a short day, only one medication, should be by out by noon. Am happy to be finished with the others for now, especially the methylprednisone which makes me feel bloated and icky. The good news is that it's down in the 70's tonight, gentle breeze, the fireflies are out. Sometimes you gotta fly 10,000 miles for evenings like this, and sometimes they just come to you. And this following terrific thunderstorms the night before. Things to be grateful for. Cheers!

Chemo - Day 3

2008-07-23T16:43:00.000-07:00

Next day, same cocktail. One more day of this, then the last drug on Friday. A new side effect today: edema in my feet, something I've had before while on chemo. Fat ankles, I'm so embarrassed - NOT. And the treatment is: put my feet up. (Hal thanks for the offer to help keep them elevated, but I'm doing OK so far. Maybe this weekend?) I will be monitored to see if I need medicine for it, but so far it seems to be under control. It may be due to the extra hydration I'm getting along with the chemo. A little more fatigue, a little less appetite. But I'm able to read, write and call my co-workers and family to harass them.

That's all for today, hard to type with my feet up. Cheers!

Chemo - Day 2

2008-07-22T14:33:00.000-07:00

Same stuff, different day. Things go like clockwork once you get there. The only major side effect so far is fatigue. No nausea, thanks to Anzamet. I feel like I could lay out most of the day, it feels like the fatigue you get with the flu but without the achiness and general misery (so far). There is energy underneath that feeling, and while I take a nap for an hour after I get home, some energy comes back in the evening. I can get laundry done, dishes washed and dinner cooked - as long as it's simple. The caveat to all this is that the effects of chemo are cumulative. While I feel a bit more used to it today, I expect to feel more worn down as the days go on. And next week will likely require a lot more rest than I need now.

So what do I do with myself? At the moment I'm working on thank-you notes to the many people who have been so kind to me the last few weeks. I'm working on smoothie recipes with my new blender, which seem to be the best choice for breakfast (thank you Mike D.) I'm reading and starting to do a little writing again. Spending a fair amount of time talking on the phone. Which brings me to another point:

This journal is not intended to keep conversation away but rather to help me with not having to repeat things that so many of you will want to know. I still welcome questions about treatment and how I'm doing. I want to hear from people via email and phone whenever you feel like getting in touch. So there. Cheers for Tuesday!

Chemo - Day 1

2008-07-21T16:27:00.000-07:00

Well, you're probably wondering where the name of this little enterprise came from (I hate the word 'blog' - ugh). My friend Nancy, who has her own physical stuff going on, calls me up every once in a while to say she's gotten a call from her doctor who has told her, in essence, that 'she hasn't got time for a 3 minute egg.' By that she means her blood counts are off. It's a funny line, so I asked her about it. She got it from a comedian years ago. Do you remember the movie Love Story? At the end Ryan O'Neal is leaning over Ali McGraw, holding her in his arms as she's about dead, and the comedian somehow gave O'Neal the line, "You don't have time for a three-minute egg." Well, I think it's hilarious, and thanks to Nancy, I now have my mantra for treatment: I have time for a 3 minute egg.

So, chemo, day 1. The outpatient clinic at the Kimmel Cancer Center at Johns Hopkins is busy, lots of coming and going. We're sectioned off in pod-like things, 10 spaces for treatment in a pod, maybe 5 or 6 pods, but I didn't count those. There are niches with beds, with recliner chairs, along the windows with space to lay out or sit up. Each niche has a small flat screen TV with local and basic cable channels. There's a snack lady that comes by every hour or so with chips, cookies, drinks. You can order lunch from a sub shop, but I brought my own. (The cookies were wonderful Dale, thank you.) But alas, at the number one hospital in the country, there is still no cocktail service. I will endure. It's comfortable and everyone is very friendly.
My doctor's nurse Jane is terrific, a former trauma nurse, she's been in oncology for a while. She prepared a great big notebook full of information about treatment and about Hopkins, with all the useful phone numbers I will need while in treatment. She and I talked several times last week to prepare for chemo and I came in this morning with no major questions or doubts about what would happen.
My oncologist, Richard Ambinder, MD, PhD has been great too. He spent 90 minutes talking to me about my diagnosis and treatment options. As I type this, he's on his way to a conference in Nigeria, and will be back on Friday. He goes a lot of places. Here's his page at Hopkins: http://www.hopkinskimmelcancercenter.org/experts/doctor.cfm?doctorid=46 I Googled him and stopped looking at the entries after 20 pages (mostly journal articles, but still).

So, I'm getting a regimen called ESHAP. It consists of four different chemo agents: Etoposide, Cisplatin, methylprednisone and Cytarabine. I was there from 8:00 am to 2:00 pm today, a little less time than predicted. Monday through Thursday this week I get the first three each day; Friday will be shorter, I'll get just the last one. I go back on Saturday for a shot of Neulasta, something that will boost my white cell production. Then I rest for two weeks, not the three that I thought I would get. And I'll need it. I'm somewhat wiped out tonight: fatigue that's a lot like that of the flu, and a little bit of spaciness - yeah, yeah, I know, I'm a space cadet most of the time. But I am managing some things: feeding myself, putting laundry away, taking a nap. And no unexpected side effects so far.

That's all I can manage for now. More tomorrow. Cheers!