Tuesday, March 30, 2010

Definitely a "don't see, don't know" scenario

Have developed a rash in response to one of my two chemo drugs, but the treatment is more important than a rash, so the nurses have applied a very pine-y scented balm for it that helps tremendously. It doesn't itch, quite, but it isn't sitting quietly, either. But if I must sit on the edge of a major itch, at least I feel as though I am awash in a fragrant spring glen as I take it all in.

Another aid for the rash is a slightly different cortisone (SP?), which appears to be helping my head form into yet another shape.

My torso already looks more like that of a heavyset man who has developed midlife breasts, alas. If that's how I looked before this all happened, well, I've been living in my own Private Idaho, haven't I?

I'll spare you what we've come up with to deal with my bed sore--yes, I've developed one of those. Apparently it is being addressed by a balm that Barbara picked up for me this afternoon. A balm that is best supported with plastic wrap (I'll let you figure out where and how). Lovely way to get to "crinkle" my way across the floor .

An official leave the hospital date has been announced, but I am not going to hex things by passing it along. It is all dependent on labwork and my body's reception of the blood and platelets she's been getting by the truckload, and that appears far out of the range of my powers.

So let's say fairly soon, okay?

Many thanks to Barbara for said ointment and for running to get fun deserts and an actual, factual pasta dinner for tonight. She'll be missed terribly by yours truly when she heads back home tomorrow, yes indeed-y.

Time for this one to head to bed, methinks--but oh, one more antibiotic to take (hooray!).

Happy day to you, Ann

Monday, March 29, 2010

Hope and off the reservation food!

News abounds--the abdominal scan didn't show anything, my labs continue to "trend well" and after I receive another chemo on Wednesday, I may find myself heading home for a week off.

But there are concerns about my liver and other bits that may keep me here, so I'm not banking on it.

(But wouldn't it be nice?)

On another good news front, friend Barbara arrived around noon and we've been having a good afternoon of conversation and commiseration. She's now off getting me some food from the cafeteria, since I was given the green light to have something else to eat by not one, but two doctors today. Have decided that it's a good sign that I am tired of the variations on a chicken theme offered to inmates--when I was really feeling lousy, I didn't really care.

But now I do--and here's my food, so off I must go (hooray!).

Sunday, March 28, 2010

It's a look

My personal vampire tendencies continued through the night, aided and abetted by my new PIC line--was the grateful recipient of even more blood and platelets and was also able to offer blood for testing without the infamous "little pick" caution. Easy, breezy blood work, if you will.

So this new line is making my life easier, as promised. But I have to tell you, I feel more than a little alien with access lines coming out of my arm. It helps that they are purple, but only a little.

But my look, such as it is, is also enhanced by an oxygen mask that covers half my face and makes quite the racket. The racket is made by adding water to the air flow; seems to help with the nosebleed situation, so wear it I do.

Toss in a blue johnnie, white compression socks and purple Crocs, and you can imagine the style I exude as I roll slowly (oh yes, I'm using a walker these days, too) down the hall.

On other fronts, the only word on the scan is that the doctors probably won't look at it over the weekend.

Was so happy to see Jennifer and Scott, the happiest fiancees (SP?) in town. Nothing like a hilarious array of stories to help one still feel part of things, and as Jennifer is a comedy and work friend, she keeps me in the loop with two big parts of my existence that are completely on hold now.

What a friend! Plus, her Scott, a sweet pea of enormous proportions, had some good news to share regarding a math test that he had been studying and studying for (he passed). As the math part of my brain is a very dark and scary place, I find his success particularly impressive. Well done, Scott!

Which reminds me. During my dark phase last week, I recall being on the receiving end of a diabolical array of questions. They were designed to determine my lucidity, but had a decided mathematical bent I find unfair in retrospect. For example, one test was for me to count backwards by 7s starting with 100. May sound like child's play to you, but to me, it brought up every kind of math anxiety I've had since 4th grade. With the added bonus of being in a hospital bed with doctors staring at me, expectantly, while my brain feverishly worked on the problem.

Nice.

Isn't there a kinder-to-the-verbal-set way to test such things? Where are the grammar-based challenges for the word wonks? Maybe a spelling bee?

Well, should wrap this up--breakfast is coming any second, and I don't want to miss that! Lew should be coming along soon to continue his weekend coverage (bless his heart), and I may have some other friends coming by to visit later, too.

With love from the 21st floor, Ann

Saturday, March 27, 2010

New room with a Lew

Am very happy to report I was moved to a new room on the 21st floor last night. It's a single, which makes it so much nicer for everyone. My latest roommate had some sort of infection, which was a worry for yours truly as my white blood cells are down right now. My new floor is dedicated to chemo for folks like me, too, so it's the place to be for many reasons.


Dear Lew arrived at the hospital around 8 this morning and as I neglected to tell him that I had been moved (am just puzzled by my behavior in this matter), he went to my old room, perhaps giving the current resident a fright.


In a word: Oops. (Hard to imagine Lew really scaring anyone, though, isn't it?)

This morning's first order of business was a scan of my abdomen, which required me to fast from midnight on (not one of my favorite things). Lew came along for the trip, which was comforting, and I hope we'll hear something of a report eventually. (Nothing was forthcoming in real time, naturally--there are channels to follow and so forth and so on.) Another "to do" today is the addition of something called a PIC line, a more extensive than usual blood access and chemo line. If it means I hear "now you'll feel a little pinch" less often in the middle-of-the-night, that works for me!


But my favorite event today was getting tidied up a bit--including wearing actual, factual underwear.

Yes, this qualifies as a big day--woo!

Now I just got a call from Jennifer and Scott, who are approaching the building to visit. Will report more later--xo from the 21st floor, A

Friday, March 26, 2010

Contrary creature

My system is a puzzlement to my dear doctors. I received two fresh batches of blood and one of platelets yesterday, and didn't get a boost from the combo. Instead, I seem to have chewed them up and spit them out.

Sheesh!

So, the night nurse just came for another blood sample for my dear doctors to puzzle over.

Never wanted to be a woman of mystery, friends; certainly not a woman of medical mystery.

This development also means yours truly will not be going home any time soon. Tuesday is the earliest possible day now. Oh well....

More to come from the dear doctors and beyond. All good, A

Thursday, March 25, 2010

Back--I think--on track

Fell off the planet a short while there, sorry. I really, really felt lousy, then I felt worse. Then I slept for a number of days, waking only when my brother arrived from D.C. (Who knew Lew had healing powers?) Before I came to, a team of doctors at MassGeneral put me through my paces. I have had a number of procedures that I would be hard-pressed to explain. My blood has been repeatedly tested and filtered and I have received several blood and platelet transfusions and more are in my future. My system is under siege, basically, and will be for a while.




As for here on out, my hematologist's nurse practitioner put my status thusly: "Ann is metabolically extraordinarily busy."



I've had a number of roommates, each of whom is facing a far more difficult diagnosis than I. That helps keep things in some perspective, but still, feeling like (expletive deleted) puts one's compassion to the test. Or maybe it puts it on the back porch? Mother Theresa's legacy has no worries where I'm concerned, let us say.



The good news, as always, is that my friends have shown up big time again. Besides Lew, Val, Joan, Karen, Pastor Andrea and Mary have been on hand offering help and support, root beer and sweetness.

Nurse just arrived, time for pills, more tomorrow.

Sunday, March 21, 2010

Does Thursday work for you?

My roommate is on her way home, and I'm not.

Phooey.

Next ETD? Thursday. Still not quite up to snuff, alas.

Back on my chemo Valcase, but not on "new" agent; pain management still a work in progress. And that "regularity" business? Still highly irregular. And I just don't feel very good.

Realistically, the hospital is the place I ought to be, but I'd rather not be here.

That's today's whine.

Today's good news is that Val and Joan, visions of mercy from NYC, are here, replacing Karen in the "taking care of business" role she's filled so incredibly for a while now. Thanks to them, Karen was able to rendez-vous with Sky in time for a show in Worcester they had been planning for ages now.

Mary may be filling in for Val and Joan in a few days to boot.

And another packet of platelets are wending their way into my bloodstream as I type.

So, the Patch-a-Thon Continues, and I should be feeling better, if incrementally, as time goes on.

Or something like that.

So, that's the latest.

And I am still drugged up but good (bad?), so again, the usual caveats apply. Will let you know you know what, if anything, I learn tomorrow.

xo from Boston, the land o' beans and delays,

Ann

Saturday, March 20, 2010

Only fooling!

I'm not home today after all, friends. Instead, I spent the night at MGH and will likely be here until Monday or Tuesday.

Oh well.

My last radiation treatment was this morning, too, which took a whole lot more gumption than anything I've had to do so far (yes, including the nasal yeows). The lower back pain decided to shoot up when I got flat, which meant held my breath through most of the zaps, and hope I don't have anything like like that on my menu for a long, long time, if ever. Color me wuss? Feel free!!

The head of the myeloma program here came by to give me an overview of my new pain approach, and to remind me that once the treatment starts getting my dear bone marrow back on line, pain management will be easier (in about a month's time or thereabouts).

FYI, this was written under the influence of more drugs than Heinz has pickles, and I apologize for any lack of vim and vigor in speech/clarity/what-all.

What's a gal to do, right?

May the Beantown stupor be short-lived--xo, Ann

Friday, March 19, 2010

Woke up around 4 a.m., too excited about the prospect of heading home today to sleep any later. Also had a nosebleed to contend with, which didn't help inspire a groggy frame o' mind, alas.

Am worried about my final two radiation treatments. Felt like the dear, devoted doctors, nurses and techs threw the kitchen sink at me last night, but when it came to lie flat, my back just said no.

So frustrating!

But today is another day, and there are likely a lot more things that can be done so I can get one more treatment under my belt before heading home tonight.

And there was good news yesterday that I don't want us to overlook. First, the CT scan showed no new revolting developments under the sun in my lower back, and secondly, my kidney doctor was very pleased that my kidney function was improving over the past week despite everything else that was going on--hooray!

It's finally continental breakfast time, so I'd better go get some coffee and a nibbly bit of some sort. (Won't have this service available after today, after all. 8-)

Signing off from Boston at last, Ann

Thursday, March 18, 2010

So close.....

Wasn't able to undergo today's radiation treatment. The pain in my lower back was just too severe to allow me to lie flat, damnitall.

The techs all assured me that this isn't the end of anything and it just means that I will likely have my last treatment on Monday, not tomorrow.

But I will still be heading home tomorrow, not to worry.

Happiness is pain management

Well, what do you know? I was full o' beans yesterday--yes, I know, alert the media.

Today's news is that the CT scan showed nothing, and nothing is good. Great, even!


There are no new bone issues or lesions behind the pain--the myeloma is the culprit, and since we're planning to start treatment up again tomorrow, it will not be running amok for much longer.


Last night, Karen put her famous persistence and crazy phone skills to getting the green light for a dose of pain medicine that worked. If it hadn't, we were going to have to go to the ER.

But no ER, no drama--just sleep. Wonderful, wonderful sleep. Thanks, Karen!!!!

So, that's the latest. Now must get ready for today's kidney doc visit and my second-from-last (isn't that a lovely concept?) radiation treatment.

With love from Boston, Ann

Wednesday, March 17, 2010

Quick update

Just so you know, there's been no word on the CT scan results, but I am feeling worse enough to suggest something is going on and it ain't (sorry, Mother) good.

Oh, crap.

But I did feel well enough this evening to have dinner with comedy friends Jessie Baade and Andrea Henry. It was really great to see them, and to hear about all of the good things they're working on--we're all in for some treats, people, and that's a good thing.

Karen is here, taking very good care of yours truly with regular phone consults from Sky. Here's hoping tomorrow brings answers and pain relief.

And perhaps some less than terrible news? Let's go for that, shall we?

Love,
Ann

Tuesday, March 16, 2010

Ah, t'is always something

My lower back began to ache a bit yesterday, and I was under strict instructions to tell my dear Doc if I had new/more pain somewhere, so....

Looks as though I'll be having a CT scan tomorrow to see if something else is going on, but in my lower back this time.

No need to worry--it could be nada, and even if it is another lesion, I will be starting chemo up anew on Friday. That is Job One, friends. Depending on what's what, I may be having another course of radiation, I may not.

Due to the urgency of all this, my chemo schedule is changing, too--to Mondays and Thursdays instead of Wednesdays and Saturdays. This might make getting rides more tricky, I realize, but it doesn't sound as though I really have a lot of leeway right now, so I'm just saying "Okay" to it all in the hopes we can figure something out. The dear ol' carcass comes first, right?

So, here we are. I must admit this latest twist has left me weepy more than once, including in the doctor's office, but they were dear about it, so why worry? I really can't. Stoicism might be big in the Midwest, but I haven't lived there for decades, so I'm going with whatever happens, including tears, even if a little corner of my mind is saying, "Oh for pity's sake, would you buck up a little?"

For now, no. Bucking up takes energy I don't have, so the weeps have it.

It's just been another tough day, but as with all of my tough days so far, there have been balancing bright spots. For one thing, Mary is keeping me company another night, which is a big comfort. Plus, Karen has generously offered to spend the next two nights here, and, most importantly, take me home on Friday.

And that prospect makes all this other fun 'n frolic that much more bearable, you know?

Till tomorrow, friends--with love from Boston, Ann

Monday, March 15, 2010

Rainy days and Mondays....

This was a busy day, as I had lab work, an appointment with my primary/blood doc and radiation. Had promised Val, Joan, Karen and probably Sky that I would take a cab over to the clinic, but the weather was so absurd at departure time the ETA for cabs was 45 minutes.

And the clinic is across the street.

So, I toddled. Carefully. Across the ridiculously wet, rain-slicked bricks of this @#%$%* picturesque little patch of Boston, buffeted by wind and rain.

In a word: Sheesh!

But I managed to get where I needed to get, so all's well that ends well, I suppose. The main news today is from my doc, who, looking at my lab results, said that it's really, really a good idea to get me started on treatment as soon as possible after my radiation course ends on Friday. From what he said and how it said it (this man should never play poker, is all I can say), I deduced that the myeloma has taken advantage of this break in my treatment and my protein levels are creeping up again--and that's not good.

So, I'm having lab work done on Friday to see whether I can start my treatment early next week. Fingers crossed!!

I also learned that I likely have an MRI in my future to see how well the radiation did its job, but likely not for a week or more.

(My mission today was to see if there is anything that will get in the way of my heading home after Friday's radiation, and so far it's looking as though I will be clear to leave afterwards. Woo!)

The other good news today is that my friend Mary, scheduler/singer/juicer, is here, keeping me company. She got lost getting here, but did eventually find her way with step-by-step directions from Karen, who knows this area oh-too-well.

So, this was decidedly a Monday on many fronts, but it's good to have company and a relatively light (just radiation) day ahead tomorrow. Plus, the weather is finally supposed to take a turn for the better, which can only help make this all less, er, challenging (for lack of a better word).

Love from my little patch of Boston,

Ann

Sunday, March 14, 2010

Taken care of and then some

The weather outside is frightful, but in my little hotel it's been delightful. Have been absolutely catered to by Val and Joan all day, and they just left for home a little while ago after making me promise to do a number of things (take a cab to the clinic if it's still raining tomorrow, call someone if my swelling gets worse, etc., etc.). That this list of things to do was coordinated with Karen and Sky should surprise no one who knows who's in charge of things here.

It certainly isn't yours truly!

Breakfast was one half of the mutant bagels they brought, along with some fruit and yogurt I had on hand. Lunch was pizza and salad from the Upper Crust (great thin crust!), followed by ice cream. Heaven. Have a ridiculous array of leftovers from which to choose from for supper, so there one could say that my steroids will be appeased for the balance of the day (and then some).

Val and Joan even picked up a Sunday New York Times for yours truly, which makes my Sunday complete.

They also showed me slides from their trip to Morocco last year, which was a nice stroll down memory lane (RPCV-Maroc, 1986-1988) for me. Might even add Morocco to my growing list of places to visit (aka "Bucket List," but I'm hoping that bucket moves away from me as time and treatment go on).

Tonight I'm just taking it easy, which of course is about all I'm up for, so it all works out. Plus, it is dismal, dreary and otherwise almost too damp for ducks out there, so I am just staying put (something I also promised Val/Joan/Karen/Sky I'd do).

Just found myself a Sandra Bullock film, so I'm set--hope all's well for you, too. Love, Ann

Saturday, March 13, 2010

Turn the day around

This day certainly perked up a bit after the morning coffee debacle.

Dear NYC friends Val and Joan landed mid-morning, bearing food groups and nonsense (a wind-up chicken that dispenses bubble gum out of its bum--who doesn't need one of those?). They're also avid travelers, which meant they had a lot to talk about with my friend Keitheley (always nice when friends who don't know each other find common ground, and quickly).

Keitheley was able to stay through lunch, which we had just down the street. Good thing there are so many good restaurants close by, for the weather has been ridiculous. Rain, rain and more rain--though I should be grateful. Joan heard that if this rain were snow we'd have over 20 inches of the stuff to contend with, and with my shuffle-off-to-Buffalo approach to walking, that might be the end o' me and mobility.

Anyway, after lunch Joan and Val and I headed back to my home away from home, and they showed me slides from their Hawaii trip (yes, the trip I was supposed to join them on, but let's not dwell). They then went to pick up that Rx that I want to have on hand but pray I never need to use, which was a load off my mind.

We gabbed through the afternoon (a recurrent theme with yours truly, apparently), then headed to dinner to another lovely Italian spot called Figs. Delicious, though I am feeling beached-whale-ish at the moment. (And no, I can't blame this on the steroids.)

We sat around and talked some more, then Val and Joan headed off to give me some quiet alone time. I will try to go to sleep "naturally" soon, but I am on increased steroids over the weekend, so fear I may need to try another of my mother's little helpers. The body sure is tired, but the brain--she's on some sort of hyperdrive, and not exactly open to reason, at least where sleep is concerned.

But despite a rude beginning, this day did turn around but good, and I'm looking forward to more time with Val and Joan tomorrow, before they head back to the City.

Love from my little corner of Boston, Ann

Let's hope this is a, er, passing trend.....

Delicacy alert: The following post has to do with my business end, so to speak, so the delicate among you (one never knows) may want to skip this post.

As I already reported, I had a terrible row with constipation in the hospital, and ended up taking a series of things (concluding with suppositories I will forever refer to as "bottle rockets") to ensure I'd get back on track. Ultimately, all began to do what it was supposed to, and I am now on a regularity regimen that worked wonders for a dear friend who was once up a similar digestive tree.

All appeared to be working fine till this a.m., which I hope was just "one of those things" that pop up as one is calibrating the fine, delicate balance of one's systems.

Wandered over to the breakfast bar in the hotel lounge for a morning joe and cheese danish (yes, cheese danish!). Sat and ate it in the lounge, as Keitheley is still resting, and I enjoy a chance to stare out into space (even onto Storrow Drive on a gray March day) with the best of them.

Well, I got up to get another cup of coffee, and felt something a little awry in my undies and then an updraft of aroma I usually associate with my friends in the three-and-under set, Chloe and Isaiah.

I'll spare you the details, but when I returned to my room and investigated, I had made a wee mess o' things in my underpants.

Getting a cup of coffee? Yikes!!

So, pear-shaped and pooped-panted, I present you Ann Podolske!

The glamor of illness cannot be overstated, folks.

Hope you have a much more tidy day! xo, Ann

Friday, March 12, 2010

Last radiation of the week--and company!

Had a busy day for someone who lumbers about at the speed of, well, perhaps speed isn't the word. I put one foot in front of the other with great deliberation. It's slow, but it seems to be working, and it gets me where I need to go.

Today that meant a visit to the lab, then my dear doc's NP, followed by radiation and a visit with my radiation oncologist. Just a check in/up, to see how I'm doing, which is fine. She did scare me a little by offering a Rx to a medicine that would numb my throat enough to eat--if it came to that.

My dear esophagus (SP?) is in the line of fire, unfortunately, so it could get mad enough to not go along with meals. I've had seven of my 12 treatments, however, and so far heartburn's been my biggest "side effect." Plus, it's hard to imagine a Podolske body part in support of saying no to food, but recent experience suggests just about anything is possible where my dear body is concerned.

Just hoping this is one of those Rxs that gets filled, but never opened.

Friend Keitheley was here waiting when I returned from my medical extravaganza, bless her heart. She is now out cold on the sleeper sofa in the sitting room--but for dinner at a nice little Italian restaurant that Linda and I also dined at a time or two, we have been talking, talking, talking on myriad subjects, serious and ridiculous. My favorite!

I'm still here typing away because my steroids were upped today, plain and simple. Am hoping I can blog myself into oblivion soon. Keitheley also brought the local paper, which though it's usually only about a five-minute read, can help one doze off, too.

Overall, a very good day. A nosebleed did rear its ugly head, but I think we have an understanding. Otherwise, however, all appears to be going along according to plan, I have company tonight and more expected tomorrow (my dear friends Val and Joan from NYC--and they're bringing real bagels!), and I feel more solid than I have in a while. Hard to imagine yours truly as a will o' the wisp, but I was there on my insides. Thank Whomever that feeling is lifting, is all I can say.

And in the "good news of a very particular sort" category, I add this. I can't remember who said it to me today, but when I noted how I am becoming a pear-shaped person from my ears down, this kind soul said, "Ann, if it's any consolation, it's obvious that you're on steroids."

Don't know if it's vanity, don't care, but that made me feel better. My insurance company case manager was a little less subtle--she told me to stop looking in the mirror!

Well, that's enough on Podolske the Pear Shaped for now. Thank you so for checking in--love, Ann

P.S.: Carol K--my little home is in the John Jeffries House on Mugar Way or something (no identifying materials in the bedroom, sorry).

Thursday, March 11, 2010

Out of the Big House!

I am sitting in my new digs, a sweet little flat across the street from the hospital that has been "home" for a week.

Hard to believe I landed there a week ago, but I did--my, time flies......

But the big news is I'm out of my johnnie and into casual clothes, my hospital ID is in the trash and I am just hanging out on the couch watching a rebroadcast of "Charlie Rose" in my combination kitchen/sitting room. Plus, the transfusions had the desired effect, and I feel much less reedy, more substantial today. Have walked a great deal, and feel okay about it all.

Happy day!

Of course, we had a glitch. My first room was on the third floor, but then the elevator broke. I may be able to go down three flights of stairs right now, but up? Not remotely possible, at least w/o a Sherpa. Karen was sure I was going to be moving to the Holiday Inn, but they found me a room on the first floor (closer to the morning coffee and croissants!), so all has been forgiven.

Karen also made certain that I had a fully-stocked kitchen before she left (anyone surprised by that?). We also discovered that there's a delightful gourmet store just around the corner--and they have good-for-you-things and treats that will likely be my siren song this coming week.

I never have been a model of moderation where delicious food is concerned, but now that I'm on steroids, ALL BETS ARE OFF.

Speaking of which, I crossed a weight line this morning I swore I would never cross. So much for that, eh?

Worrying about my weight now seems just plain idiotic, don't you agree? (If you don't, please be so kind as to keep that to yourself, okay? Thanks.)

Today's bigger news is I'm out of the hospital and Karen is wending her way home to her dear Sky--and I feel much better than I did just a couple of days ago.

Woo!

Well, my room service has landed, so close I must.

Sign me: Very grateful to be signing off from a couch and not a hospital bed, Ann

P.S.: Extra dose of gratitude to Mary and Melanie and all the fine friends tending the Bombshell in my absence--it's been a week since I've seen her, and it helps to know she's being looked after so beautifully while I'm here. Love to you all!

Wednesday, March 10, 2010

So, things didn't go exactly as I had hoped today, but I think it will all be for the best (at least that's my story, and I'm sticking to it).

The IV fluids did help turn the kidney numbers in a positive direction, but it appears I am anemic. That's a common issue for someone in my shoes, as my bone marrow's march back to self-sufficiency has been deferred by the need to go after that so-n-so of a lesion on my spine.

So, eventually, the theory goes, my bone marrow will have its time in the sun and will get better, but we have a more pressing engagement to attend. I get it, and am endeavoring not to get too anxious about it (but expecct some anxiety is normal....right?).

What this all means is that I'm spending one more night here so I can have a blood transfusion. Or two. That will take about four hours or more, so it just doesn't make sense to "check out" tonight.

Karen is being characteristically trooper-ish about this, bless her heart, and is all set to spend one more night at the lovely Holiday Inn so she can get me settled into the guest house tomorrow.

So yes, this is all working out for the best. Really. Truly. No foolin'. (Although Karen's Sky may have another opinion and I do feel a little guilty about that.)

Forgot to mention that I also had an echocardiogram (SP?) and chest x-ray yesterday, as there were some concerns that the myeloma proteins might have attached somehow to my heart (I guess the little suckers like to travel). Happily, there was no sign of that, and overall my heart looks good, even though my oxygen levels have sunk a little (that may be the anemia talking, however).

The low oxygen also inspired the chest x-rays, which were also mostly clear. My lungs aren't expanding completely because of my being in bed so much, but I have been making myself get up and about as much as I can to help address that business.

Must say, though, that the addition of the IV fluids to my mix last night did make a full night's sleep challenging. I had to go to the loo every two-to-three hours, so today am feeling very, very tired.

But once I'm in the lodge, a full night's sleep should be back on the menu--hooray!

The moral of today's story, then, is that things aren't going exactly as I had hoped (shocking, I know), but it does look as though all will be back on track tomorrow--and I will feel more substantial due to the transfusions.

Ah, supper is landing--gotta go. Love to you all on my last night in johnnie-land, Ann

Tuesday, March 09, 2010

Another "we shall see" season

Hard to really say what's happening right now. While some of my numbers are improving, it seems some very important digits are not moving exactly where they're supposed to move.

The numbers revolve around my kidneys and their function, which remain impaired for now. The good news is they expect it all to get better, but it appears to be taking longer than they thought.

But I'm not supposed to worry, so let's work on that, shall we?

The biggest downside of today's news is that it may prevent me from moving out of the hospital and into my lovely local guest lodge tomorrow. Karen and I took a stroll over there today (it was more of a trek for me, who hasn't really had a proper walk for days now), and it appears ideal for my purposes. The room is small, but has a separate bedroom, a sitting area (with pull-out sofa), kitchenette, flat screen TV, and full bath--and free wireless, so my natterings can continue. And it's all of a 15-minute walk to my radiation treatments, on a street with tons of restaurants and is solid as a rock--I will be very surprised if I hear a peep from my "neighbors" in the place.

The move to the lodge matters most to me for it means that Karen can cease her caregiver duties here and get back home to her dear Sky. That would make me happy, even though Karen assures me she is where she wants to be.

My heavens, such friends I have, eh?! For all the questionable developments in my life of late, I have been blessed in many ways that matter, and for that I am grateful.

And there is a chance my numbers could go in a good direction tomorrow and all this worrying could be for naught, so let's not get ahead of ourselves (sorry I'm dragging self talk into here, but my brain retains info better if it sees it in print).

On other fronts, my friend Hilary made sure the plumbing inspector could "bless" my new hot water heater at home, and for that I am very grateful.

She also gave dear Shwea a lot of attention, which was good of her. Of course, Hilary has known the Bombshell since she was a pup, so I think it meant a little more to my favorite furball.

Well, supper has landed, so close I must. Am hoping my next post will be from the guest house, but we'll manage no matter what.

Lest I forget, the radiation is doing its job--the tech there noted I seemed far less stiff today than when he saw me on Friday--so there's still good to report. With love from still sunny and beautiful Boston, Ann

Monday, March 08, 2010

Monday, Monday.....

Even though I am not working, today was a Monday with a capital "M."

My biggest challenge requires a SQUEAMISH ALERT: Between all the pain meds and my general lack of activity, I found myself constipated beyond all reason today. I'll spare you the details, but suffice to say I was miserable most of the day, and wasn't exactly high on life yesterday, either.

But I'm all better now, thank you, and am VERY grateful this is, uh, behind me. Am hoping it won't be as much of an issue going forward, for I am now taking some "preventive" medicine, and thanks to the radiation treatments (had #3 today), my back is not in as much pain, so fewer meds need be applied. Happy day!

Also met with my dear blood and kidney doctors, and learned about the new medicine they'll be adding to the mix from my primary doctor's nurse practitioner. Once my radiation treatments are done and my numbers are back up to where they should be (approx. a week or so), I will resume the Velcade (the Wednesday and Saturday chemo) and adding something called Revlimid, which is a second generation of thalidomide. Yes, that thalidomide. (The former anti-morning sickness drug that caused terrible birth defects, alas.)

It apparently works wonders with multiple myeloma, so here we go. Because of its questionable derivation, the drug manufacturer makes potential patients answer a lot of questions about whether they will get pregnant. As you can imagine, not one of the questions addresses the possibility that the patient in question could be gay. Sigh.

They want me to have either had a complete hysterectomy or to have not had a period for 24 months. I don't meet either criterion, but being a lesbian widow of 50 does rather reduce my chances of an "oopsie" pregnancy, don't you think?

Am hoping upon further reflection the company will see how small a pregnancy risk I am. Really--it would take a rather extraordinary set of circumstances for me to find myself with child. Something like being the vehicle for the Second Coming extraordinary.

Otherwise, Karen and I enjoyed a visit from Lisa K. of my church, who came bearing my laptop, prescriptions, and a doll from a sweetpea at church, so I can set up shop at a nearby hotel when I get to leave the hospital (Wednesday looks promising....we shall see). Am hoping Wednesday is the absolute latest day Karen gets home to her Sky. Karen's been such a gift, taking notes and asking my doctors questions that she and Sky have formulated, finding me apples and other delights in the cafeteria and elsewhere. But really, I am fairly confident this is not how she envisioned spending her retirement, bless her heart. As my brother said when I told him that Karen was accompanying me yet again to MassGeneral, "above and beyond."

Indeed.

Well, it's time to pack things up and get ready to hit the hay--after "The Closer" ends, of course.

Thanks for stopping by--hope all (and I mean all) is going well for you. Love from the shores of the River Chuck, Ann

Sunday, March 07, 2010

Good news update!

Am typing with one hand--my left hand, no less--so pardon any typos. The nurse took out the IV line in the crook of my right arm, and I am not to bend it for 30 minutes.

But I have some good news, so let's try being a lefty, shall we?

The oncology hematologist who is covering this weekend said that the radiation should act like napalm on the "plasma cytoma" (SP?) that is a long, pencil-esque lesion on my spine. That is a much better result than mere "shrinking," IMHO.

TMI alert: He also told me that the little bugger is the result of bone marrow leaking from a crack in my spine. They couldn't find the crack on the MRIs or x-ray, but it's somewhere.

To this news, Cousin Pat couldn't help but add, "Well, we've always known you were cracked."

So yes, now it's official. I'm cracked, but the "export" made possible by this fissure is going to be eradicated--hasta la vista, Baby!

Happy day!

Today is not likely a radiation day after all, but that's okay. The doc said that just means I'm not at high risk for more problems, which I'll take as a good sign, too. All will resume tomorrow.

So, that's the latest medical news. After lunch, Karen and I are going to go outside and soak up some sun and fresh air--it looks gorgeous out there, and I am looking forward to it.

Will be rockin' my johnnie and winter coat, with a pair of organic crew socks and purple Crocs.

If ever there was a time to embrace "lesbian fashion" as an oxymoron, this is it.

Lunch has arrived, so I'm off--love to you all, with particular gratitude for your comments, Ann

Saturday, March 06, 2010

Update attempt # 2

Have had my second radiation treatment--after a full breakfast, I'm happy to note--and may (not definite) have yet another tomorrow.

They're not messing around with that blankety-blank mass, and I am glad they're taking a no-prisoners approach (even if I do fancy myself a peace, love and understanding type of gal). If you want to think about what should be happening to said mass, the operative word is SHRINKING--it should be SHRINKING.

Excuse me: It IS shrinking.

So let's all think shrinking thoughts, shall we?

My kidney function has improved, too, which is good news as well--no extraordinary measures required right now, which works for me.

That extra MRI? It took two and one-half hours. Thank Whomever for Ativan and pain meds, for it was a lot to take in. No music, either, so I found myself trying to imagine which music went along with the banging and clanging best. Green Day came up most often, followed by the B-52s, which I listened to during my first MRI the day before. Perfect music to MRI by, that.

Yesterday, Karen and I were graced by a visit from Mary (aka the Singing Juice, Shwea's favorite step-mom and my scheduler) and her Lynn, who came bearing scones and hilarity. Good combo. We had a tremendous visit, and talked about light things and more frightening things as well.

No one should be surprised that the appearance of the mass in my back has put my worst-case-scenario center in my brain on high alert. I am frightened, in other words, and talking about that with Karen, Lynn and Mary gave me the courage to ask my oncologist what the mass may mean where my original prognosis is concerned.

It all comes down to how I respond to treatment. This sort of thing is common with multiple myeloma, so there is a good chance I will still be able to wrest some good long time out of this life in spite of that shrinking violet in my back.

They are planning on adding another chemo to my current Velcade to help this all along, but that won't be happening until about 10 days after my last radiation, which will be in two weeks or so. We're still working on where I will be staying while in Boston, but I'm sure that will work out somehow, too.

Things tend to do that for me, even if I do seem to need to hit some heart-stopping bumps and potholes along the way. Sigh.

Here's to things smoothing out, returning to normal (or whatever that is for yours truly) or shrinking away to oblivion, depending.

Thank you so for your concern and notes--I will try to keep the info coming as time and circumstance allow, and hope you all are well and happy and enjoying what looks an awful lot like the beginning of spring outside my enormous hospital room window. (I can see the Charles and sailboats and hawks and all sorts of beauty from my bed--isn't that nice?)

Love to you all this gorgeous, good-news Saturday, Ann

Friday, March 05, 2010

Quick update

Had my first radiation treatment this morning. Bless them, they scooped me up before breakfast, so I ate graham crackers and cranberry juice in the Radiation Dept. for my morning meal.

Lunch was just a short while ago--yes, da noive!

Anyway, food aside, I'm glad to have one treatment done. Word is I will have 12 treatments altogether.

The only side effect so far is heartburn, which they're finding a way to address.

Otherwise, I get to have another MRI (the first missed the last bits on the bottom) today, and I had a consult with a kidney man, as my kidneys are underperforming (15-20% of normal) in an alarming way.

Well, a nurse just stopped by and I need to close for now. Bye!

Thursday, March 04, 2010

This is getting (more) ridiculous

Today's MRI told us I have a "mass" on my spine, and I'm back in the hospital again.

Tomorrow, I start radiation, and may be having radiation for the next three weeks.

No chemo while this is going on, of course. Oh my.

But, the word is most people respond well to this treatment, so I'm choosing to go along with that.

A surgeon is waiting in the wings in case the radiation doesn't work; the mass could mess with such vital systems as walking and elimination and the like. Altogether now: Yikes!

Karen is keeping me company, but I hope to be sending her home in a few days. Will arrange to have my laptop during my stay, so I'll be keeping in touch. Am also going to get coverage for the Bombshell once I know what my schedule will be. Let it be soon!

Dear people: If you have any pull with Jesus, a Higher Power, gods and goddesses, or any major or minor deities at all--Earth Mother?!--would you please apply a smidge of your mojo to my case?

Well wishes work, too.

So, that's the scoop. Not what I had hoped, but my opinion appears to carry little weight these days, and I am just going to stop trying to project my wishes on what should be happening and just let what happens happen.

I think life will be far less disappointing this way, and a lot easier to calibrate to--which is what I'm doing.

And trying to keep my humor, though tonight they put me on massive doses of steroids and then told me I couldn't eat.

Rather like letting someone eat a jar of salted peanuts then saying, "Sorry, no beverages for you."

GRRRRRRRRR!

So, while I would like to think my Midwestern demeanor and humor will help me sail through this with aplomb, the steroids may be an X factor even 24 years of training as a human sheep cannot overcome.

There may be hissies, in other words.

And I will report them here, for confession is good for the soul, and you might find them funny.

And that might make this worthwhile. Well, a little worthwhile. (Let's be real, people--I'd much rather be home and healthy!)

Love from the ER in a major metropolitan hospital (no room at the inn quite yet, alas), Ann

Wednesday, March 03, 2010

Whew--that was close!

Almost ended up spending the night at MassGeneral, friends. Seems my kidneys are not happy--even less happy than they were when I was first diagnosed, as far as creatinine (SP?) and other substances go, in fact.

My dear doctor is not entirely sure why this is happening, because it could be any number of things--all because I am still very early in treatment and, as you know, I have had a lot of (mis)adventures since this odyssey began.

But he was clear that this does not mean the treatment isn't working--it is just too soon to say.

Until my kidneys are happier, though, I will be going to the local hospital (yes, the one nicknamed Cooley Dick, Scott) and getting extra fluids tomorrow and Friday, most likely. Seems I need to be taking in about four litres of water each day (and that's a LOT O' WATER). Am also drinking as much as I can to aid and abet my dear little filters, so if you hear a loud sloshing sound, odds are it's yours truly, Ann Podolske.

On other fronts, there is also some concern that my backache may not be due to "just" bad posture and hospital beds. Alas, it is a concern I've begun to have myself. So, to investigate further, I will have my first MRI tomorrow morning. I am having it in an "open" MRI, as I confessed to being a bit claustrophobic. I think it has something to do with being asthmatic, and maybe also to do with getting stuck on a very small elevator with a lot of people once in Manhattan. Shudder!

Either way, I am glad they are humoring me and putting me in a less constricted space. Here's hoping it all goes well and my aching back is just that.

But, it's good to know no matter what the cause, this I know. With this stuff, ignorance certainly isn't bliss.

At least that's what I keep telling myself.

The good news today? My platelets are up even more--176, I think (the results are with my friend Sky for review). And one of the staff at the hospital had a scarf on her head that suggested she was Muslim, so I greeted her with the "salaam-mah-lay-koom" I learned 20+ years ago in Morocco. Turns out she moved to Boston from Morocco, and lived not far from where I did in the Old Country. Small world!

The other upbeat bit is that the steroids are doing their usual excellent job on my usually aching back, which means I barely know it's there.

Of course, I'm also eating as though I am the entire U.S. Olympic Team, and hope you'll all forgive me my girth until this preposterous business is over.

As I may have noted (forgive me any repeats), a frequent question in hospitals is, "Have you had any unplanned-for weight loss?"

Surely you jest! I have a ridiculously difficult time with planned-for weight loss. For pity's sake, I can't even lose weight with cancer!

On that note, I think it's time for this crankypants to go to bed. Thanks to Karen for sticking with me through today's extra-long MassGeneral trip and to you for checking in, friend. Love, Ann and her shadow (aka Shwea)

Tuesday, March 02, 2010

Thought today was going to be a "light" day.....

Today was a full, busy day. My friend Ron, who as soon as I am up for it this spring will be renovating my kitchen, came by with '60s-era Formica chips for my perusal. (I'm planning on having a little fun with this space, for as you know, Padlocked is all about the fun from here on in.)

He also brought along an orchid and a copy of Pema Chodron's "When Things Fall Apart," too.

No, not your father's contractor, our Ron (couldn't be happier about that, mind you).

Also, my plumber, Mr. Wilson, came by to get paid for the new tankless hot water heater he installed recently. It's a beaut! He also helped me complete my nice, big Baystate Gas rebate form for the energy efficient addition I've made to my home.

I now have a high-efficiency furnace, on-demand tankless hot water heater, super-efficient washer and dryer, and a hybrid car.

Making progress, people!

This afternoon I had another blood thinness test (for lack of a better way to put it), and apparently post-transfusion my numbers are waaaaay off. Even though I am what the medical community considers "heavyset," my blood is thin.

Doesn't that just burn you? It does me.

Won't be taking my "thinning" pills tonight or tomorrow; that should help. Thanks to Kate for driving me to the clinic and CVS--double duty!

Also, I'm back to Boston tomorrow for treatment #5, and am very glad I'll be seeing my doctor soon. And getting new results. (Here's hoping the news is good!) Karen is taking on the task tomorrow, bless her generous heart.

The house will be tended by another friend, as well as Melanie, the Bombshell's favorite pet-sitter. So, all is well on that front.

And I get to take steroids tomorrow--energy will soon be mine! Bwaahahahahahaah!

Ahem.

The day is wrapping up nicely, too. Aunt Mary dropped off two Boston cream pie cupcakes--isn't that a great idea? And the head of my department at Big Company and a dear friend sent cards that made me a little teary-eyed (in a good way).

This poem, by Annie Johnson Flint, was on one of the cards. Works for me:

God has not promised
skies always blue,
flower-strewn pathways
all our lives through.
God has not promised
sun without rain,
joy without sorrow,
peace without pain.
But God has promised
strength for the day,
rest for the labor,
light for the way.
Grace for the trials,
help from above,
unfailing sympathy,
undying love.

Monday, March 01, 2010

A little more ballast

Today was blood transfusion day, two units' worth. Didn't make me feel like a million bucks, but a lot more than the $1.49 I have felt like of late.

Mostly, the new blood seemed to affect my general seaworthiness. As I walked out to Karen's car afterwards (bless her and Mary for doing a tag-team job of keeping me company today), I felt more solid, as though my legs were made of sterner stuff.

No small thing, that.

Also had more work done on my aching back by a gifted PT, who did a variety of things to yours truly, the most amusing being a pair of metal pads that sent vacillating current across and into my skin. My back felt as though it was being massaged by a couple of very strong centipedes, for lack of a better way of putting it. Almost fell asleep on the table, it was so relaxing--and my back didn't hurt during this process at all (the other things that were done? Never mind).

Came home a half hour late for the Bombshell's feeding, but all has been forgiven (she's easy that way). Had enough gumption to make a decent supper (salad and cheese tortellini and sauce), and am now contemplating a short walk, perhaps with She Who Must Be Obeyed. We shall see.

Tomorrow is a light day, which is good, for Wednesday treatment starts up again.

Works for me.

Hope all's well with you, Ann and the post-supper snorer