Wednesday, April 28, 2010

So you don't worry....

Just so the nervous types among my friends and family don't worry, I'm okay. Have been keeping busy when I have the gumption, taking naps when I don't.

A number of my dear friends and one WI cousin have offered their bone marrow if it would help, bless their hearts. Think I heard one of the doctors say siblings are preferred, but will learn more Monday as to what's what.

It's all speculation, for my dear numbers have to get to a certain place before any transplant could happen, anyway, so I'm trying not to get ahead of myself here.

We shall see, in other words....

Tomorrow is a treatment day for yours truly; it's also the day that Aunt Mary takes Shwea in the to vet to see what's been ailing her for a while now. Poor gal woke up sick this a.m. and has been balking at her food--always a worry for a member of this family! Would appreciate your healing thoughts for the dear Bombshell tomorrow, too, if you have some to spare.

Well, even though I had about a four-hour nap this afternoon (it's a no-steroid day, in case you're wondering), I'm getting tired, so close I must.

Hope all's well with you--love from me and Sleeping Beauty, Ann

Monday, April 26, 2010

Pardon the news blackout

Heard from a couple of friends today that my lack of posting over the weekend caused worry. They feared it meant I was in a bad place, as the last time I didn't post for a while, I was in a dodgy place, indeed.

Now, I have no control as to the deep, dark places you may go with your worry, but you needn't have.

This weekend, I was in a busy place, simply put. Saturday was primarily "Curb Appeal" day at my home, as Sita and Lynn worked on my yard (Sita cleaned up the yard and mowed, Lynn weeded and mulched), among many other things. (Sita also fixed the ripped piece of plastic on the back porch that has been flapping for months--that will improve my mental health tremendously). Mary made both yours truly and Shwea lunch (we were both charmed, I'm sure), then tackled some laundry, which is always most appreciated.

Then Jo and Chloe came by to visit, Lisa and her nephew came by--twice--to walk You-Know-Who, and I received check-in calls from a number of concerned friends and family, including my sister, whose birthday (24th) I forgot. Terrible.

And no, none of the above entailed anything in the way of physical labor by yours truly, but it was a busy, humbling day.

Sunday, I just went to church, which was wonderful, as it was our celebration of all things GLBT. Our chorus yesterday were from the local Gay Men's Chorus, which sure skewed the usual demographics in the choir loft for the day. It was a hoot, and I couldn't help but get a little teary, both because one can never hear too many gay-positive messages (particularly in a church!) and because this service always made Linda get out her handkerchief, too.

After church, however, I barely had the energy to feed Shwea and myself (though, of course I did), then went directly into nap mode. I didn't wake up until after 4.

I used to run with the wolves, now I need a nap after church. This is what it's come to for Ann Podolske.

As for today's chemo, it went swimmingly. Friend/Sherpa Dawn took me there and back, and we actually had an okay time of it. I did, however, hear more about the planned treatment for yours truly, and it reflects the fact that we are trying to push around some very aggressive Bad Boys, and my team at MGH is not messing around. Today's surprise was that I may not "just" have an auto-transplant, but may also have an allo-transplant (marrow from another person, if a suitable donor can be found), which will extend my treatment window considerably.

I have an appointment with the transplant team on Monday, and will learn more then. Will report more then, too, for my delivery just arrived and Ann does not make her supper wait. How rude!

With love from me and the blond now "guarding" said delivery in the kitchen, Ann

Thursday, April 22, 2010

Ann Podolske Irony # 3,459

It's still a little roller-coaster-y around here, but I'm back from my Thursday chemo (thanks for the ride, Sita--it was fun) and feeling fairly humanoid, so thought I'd better post while the posting's good.


Appreciate all the well wishes and support in the comments section Tuesday's post inspired. I received a number of private messages via my regular e-mail that were very helpful, too--as one would expect, the one from my therapist was a beaut.

Was particularly glad to hear from my cheering section after I read an article from the April 12 NYTs, "Cancer Survival Demands Steady Progress," by Jane E. Brody (pardon the lack of link; I always have trouble with NYT links). After reading it, it slowly dawned on me that of the two kinds of myeloma, regular and aggressive, I have the aggressive variety (reserved for just 25% of the population).

NOW I'm aggressive? This little irony bothered me almost as much as the relatively dire prognosis for people in this category. Okay, not as much, but really--if I must get my aggression on, why now, with a disease, instead of in my being when I lived in NYC and it would have been handy? Had to contend with a heckler while doing standup? Had to enter the "murderous merge" outside the Alewife T station in Boston?

Oh well. No one's said a peep about life being fair in my earshot for decades, so I am not surprised.

Should tell you that the article did raise some concerns that I shared with a member of my team at MGH, and this person was kind enough to offer some information to help me feel a bit better about things. The first being that a lot of the data referred to in the article was based on old drugs; the new drugs (many of which I've been on) have not been studied in sufficient depth as of yet. Secondly, my relative youth (snicker if you must, whippersnappers) and health (ditto), as well as my attitude and support network (thank you) make me a candidate for success. And lastly, I have already been through a mill, and did manage to bounce back (I feel as though I had a splat or two, but didn't want to quibble), which bodes well.

We shall see.

Between the kind commentary from a rep of the MGH crew and my therapist, I feel a little less freaked about it all. A heightened sense of mortality does put this gal's head in a spin, I must tell you.

But I, my MGH team and my friends and family are doing everything they can to help me make it through to a nice remission (or several), so I am going to try to keep my "spins" to a minimum. That's today's plan, anyway....

Love from me (at home!) and the starving Bombshell (dinner is due in 7 minutes, 5:00 EST), A

Tuesday, April 20, 2010

A heapin' helpin' of R-E-A-L-I-T-Y

Am sitting in my office, enjoying the open expanse of oak I now see on my desk, thanks to the efforts of Val and Joan this past weekend. When yesterday's mail landed, I dutifully found the proper home for each piece--am going to try to walk on the tidy side for as long as I can. Besides, I don't want to see any disappointment in my friends' faces when next they visit. They worked too hard!

Jumped on the chemo bandwagon again yesterday, and except for a little nausea I'm feeling okay today. They weren't able to use my new port, alas, for it needs to heal a lot more before it can be used. So yes, I was stuck--twice--yesterday for lab work and chemo. I was not happy about it, but what's a girl to do?

Another "what's a girl to do?" development was that I learned yesterday that the overall plan is this: Another cycle after this one (or more, depending) of chemo, and then, body willing, I will be a candidate for an auto-transfusion. Will need to look into it further, but it entails their collecting my bone marrow cells, then giving me two days of high-dose chemo to wipe out the Bad Boys, then, eventually, returning my cells to their rightful place. It all will entail another three weeks in the hospital, which was a blow, but I think it will be easier knowing in advance that I will be in the hospital that long--this last "visit" was harder since I kept thinking I was heading home only to be kept in my johnnie for another week or more.

And this time, I'll know how much underwear to pack. Hooray!

Am worried, of course, about leaving the Bombshell behind again for another long stretch. She's been having such trouble with her arthritis lately, but I worry about her anyway (the fact that she recently turned 13 is a bit of a worry, too). Perhaps I need to find a good house sitter or the equivalent for my next extended stay at the MGH "hotel"--if you live around here and have any good, dog-friendly house sitters to recommend, do tell.

That's pretty much the whole story for now. Am trying to enjoy each day (today is gorgeous, BTW) and the time I have with the Dowager Princess known as Shwea, not to worry, though I can't help but have the occasional "Yikes!" moment when I think about what lies ahead. I know, I know--it does me no good and I shouldn't allow my brain to go there, but alas, my brain has a mind of its own.

Love from us both, Ann and Shwea

Sunday, April 18, 2010

They're still at it!

Val and Joan showed up this morning and are still working away on my papers and beyond--can you believe it? I was surprised they returned this morning, truth be told. Who wants to pick up after two years of organizational neglect, no matter how understandable? These two!

Val is helping me to embrace the 21st century and online banking. She thinks it will help me take a more organized approach to bills (as I don't have an approach right now, she's right).

Joan is still getting Linda's and my own financial paperwork in some sort of order for tax purposes. I would have quit by now, to be honest, but she's determined. And she has done this sort of thing for her parents and others (can you imagine?).

We did take a nice break by heading to the local Tibetan restaurant, a favorite. Happily, Val and Joan liked it, too, and we were joined by Karen and Sky, who wanted to have some face time with these NYC sweethearts, as they have mostly spoken to them over the phone and via email since my medical adventure began.

Since I somehow have a major clothing storage shortage (so many underwear, so few drawers), Val emptied out two of Linda's bureaus for my use. I have been thinking it's now time that I could begin letting her stuff go, but I haven't the gumption to do anything about it. Val, bless her heart, has gumption to spare.

Tomorrow I head back to Boston to start treatment up again, and am a little worried about it. Will likely be a little more fatigued than I was this week (and no, I wasn't exactly a ball of fire), but hope that's about it. We shall see--and besides, I want to keep after those Bad Boy proteins who are heading for the exits. The only way to really show them the door is through chemo, so chemo it is. A little bit scary, but completely necessary. Like a lot of things, none of which I can think of now, alas.

Last but not least, I have my reading glasses back. Keitheley accidentally nabbed them when she visited me in Boston weeks ago, for she has a pair of the same brand. The good news is that I haven't been able to read much, so I didn't miss them. Here's hoping I will be able to use them, and soon!

Hope all is well with you and yours, xo from yours truly and the lethargic lab mix

Saturday, April 17, 2010

Val and Joan to the rescue!

Val and Joan arrived from NYC this afternoon with one mission: To help me get the paperwork strewn across my home in order, specifically for tax purposes.

Well, it's almost 6 o'clock in the evening, and they've done an impressive job so far. I can see my wood desk in my office, for one thing! (Thanks, Val.) Plus, Joan has pieced together many things that need to go with my taxes that I had no idea needed to go with my taxes. (Thanks to you, too.)

They also came bearing root beer, which was very cute of them (they can't help it), and insisted I nap when I hit a wall (seems just thinking about my finances puts me to sleep).

Which led to my being woken up for a phone call--it was from the hospital, so they thought it warranted waking me up. You know who it was? The dermatologist who woke me up in the middle of the night to take my picture that time! We actually had a good laugh about it, and he told me that what is happening with my skin (you don't want to know) is normal. Okay, then.

Lest I forget, Val has also taken on some of my laundry, which has piled up to ridiculous proportions in the basement. I have enough clean underwear for the rest of the year, but no sheets or blankies, and she's addressing that, bless her.

Ain't friends grand? That includes the two dears from church who are giving Shwea her constitutional today, of course, and anyone else who has sent a kind thought our way. Thanks, we needed that!

Well, I need to decide what needs to stay and what can go, so off I must go. Love from me and the most relaxed lab mix in history. XO, Ann

Friday, April 16, 2010

Hey--it's working!

Am running out of steam big time, but I thought you should know that today went very well--yes, even the "port placement."

The best news came from our (Karen came along, bless her yet again) meeting with the NP, who said my lab work continues to improve. One little glitch--a number affected by how hydrated I am--in the results was explained (to me) by the fact that I wasn't supposed to eat or drink anything after 12:30 a.m.

Yes, Ann P. without food for over 12 hours. Not pretty, not pretty indeed.

Anyway, the best news was the "bad" proteins are going down--in a major way. They've dropped a great deal since they were first tested, and so all that I've been through is paying dividends, friends. Happy day!

I start my next round of treatments next week, and hope the bad guys' downward slide continues as a result. That's the plan, anyway.

As for the port, it was weird, but hey--it's over. Phew!

So that's the latest, friends. Tomorrow Val and Joan come over from NYC to help me get my taxes together. If any friends could make this fun, they can. (It could happen.)

xo from me and my snoring sidekick, A

Thursday, April 15, 2010

Sweets on parade

Today began with my finding a pecan roll and dog biscuit from a local bakery on the front porch from Dana and Sarah, then I received cookies in the mail from my sister-in-law Donna, and a while later, Pastor Andrea left a bevy of cookies on the front porch for me, too.

Tax day = cookie day?

Anyway, sweetness on such a day is welcome. Sita came by and took care of the aging compost fodder that has mouldered on the back porch since I went into the hospital (yes, that long). Dawn came by to tend to some laundry that was leftover from her weekend visit, and Ann H. went grocery shopping for me. Sweetness, indeed.

I also found taking a walk around my backyard soothing (though a lot of branches have fallen back there!) and even drove the car today (and lived!). Seriously, it was very easy to drive. Getting in and out of the car was a little more difficult, but I had some banking to do, darnit.

Now I'm waiting for Shwea to come back from her last call walk so I can go to bed. Need to get up really early tomorrow, as my first appointment in Boston is for 8 a.m. Lovely, that.

It's been a good day. No reason tomorrow can't be good, either, though I may not be up for blogging about it until the weekend. There will be drugs, people, and experience suggests they just make me want to sleeeeeep. Till next time, xo, Ann

Wednesday, April 14, 2010

Not crystal for long, dare we hope?

Today a friend came by and said I seemed fragile to her. Must say, that is not a term I have ever heard used in relation to myself, but she has a point. I move very slowly, get winded easily, and my skin is still recovering from the RRR (rip-roaring-rash).

Even so, this is progress, for I may be fragile, but I'm home. Plus, an NP from Boston told me today my protein counts are down (a good thing) and my other numbers are all heading in the right direction.

In other words, the chemo I've had is working, and this fragile business will likely be a phase. A temporary one (unlike the gay business 8-).

Am almost looking forward to starting chemo again on Monday, for that is what I need to get stronger, more my "old" relatively hale and hearty self. Just a little nervous about the port, but I know my Linda had one installed, and the procedure didn't seem that bad (to me--I have a whole new perspective on her treatment now, as you can imagine).

Not that I'm an entirely wilting violet. I took the trash out this morning to the curb w/o incident, and brought it back when the Pedal People were done.

That, dear people, is what qualifies as a Big Deal around here, and I'm very happy about it. Hope you have something to be happy about, too (even small potatoes qualify), xo, A

Monday, April 12, 2010

Home again!

My bloodwork was good on many fronts, so all I needed in the way of "tuneups" before they sent me home was a liter of fluid. Bless Deb for driving me to and from Boston as well as hanging out as I had my tests, saw a doctor and NP, and sat for two hours for the infusion. A trooper!

I'll be heading back to Boston on Friday to get a port installed. The result will be a relatively "permanent" access point for all chemo and blood draws that will not require me to get stuck each and every time. I had the PICC line, but those are a bit more tricky. (I was trying to avoid getting any kind of permanent access port, but my arms have made it plain they can't take much more of this chemo business). Sigh.

Monday, chemo starts anew. They plan to eventually put me on the drug that gave me what today's doctor called a "rip-roaring rash," but from all reports, they are taking steps to reduce and/or avoid a rash resurgence. They think this is such an effective drug, I need to be on it. Effective sounds good to me. Here's hoping my dear body goes along with this thinking, eh?

Came home to some leftover beef stew, salad and yellow cake with chocolate frosting. Had pizza and salad for lunch. Yes, I'd say my appetite is okay. Now, I need to take my late-night pills, give myself a shot, and go to bed. Happy day! Seriously, a day home is a good day to your correspondent, shots or no shots. XO from yours truly and the Bombshell, A

Saturday, April 10, 2010

Guess who's home?

They let me out on Friday afternoon, bless their hearts, and I'm home until Monday, when I return for tests. There's a chance they may keep me after the tests, but there's also a chance I get to return home.

Please cross your fingers for my getting to return home, okay?

It's been wonderful to see my dear Shwea (who lost her little mind upon my return), sleep (undisturbed) in my own bed, wear "civilian" clothes, and generally live something a lot more like a normal life than can be had in a hospital room. I also had a nice long walk in the 'hood today, and the scenery was a lot nicer than anything I saw on my laps around the 21st floor at MGH.

Well, I wanted to let you know I'm H-O-M-E, perhaps the nicest word I've seen in a long time. Hope you're somewhere safe and comfortable and lovable, too. xo, A

Thursday, April 08, 2010

Getting punchy, perhaps?

The social worker assigned to my case (poor gal) dropped by today for a recap on my case, and I found myself singing a slightly revised version of the old Beatles' song, "Revolution," in response. I was referring to the need for my rash to "resolve" (doctor for "go away").

"You say you want a re-so-lu-tion, well, you know, we all want to change the world...."

The social worker, bless her stoic heart, smiled through it all, and noted my good coping skills. Although she used another phrase I can't think of right now (which likely means "off the beam, but likely not to hurt anyone or herself").

Part of my punchiness is due (I think) to the fact that I have somehow managed to have a massive allergy attack up here. My right eye has been bloodshot and weepy all day, and I woke up at 7 only to need to go back to bed from 8 to 12. I was flat out. Trees are one of my big allergens, and from the looks of things outside, Boston's trees are blooming in earnest. The nurses I've polled (my only test group) all say they have trouble with allergies, even on the 21st floor, so I think I'm on to something. Will be getting some Zyrtec soon--that will tell all.

Still, I managed to have a shower today--the first standing up since I've arrived. (Yes, I was using the shower chair before.)

Now I am going to enjoy a nice yogurt "super smoothie," which I just learned is on the patient menu. Strawberry. Delicious! A dietitian came by with this list since I have mentioned (perhaps complained about) the repetition of the day-to-day menu and how it is affecting my appetite.

Yes, even Ann Podolske can get tired of food. Imagine!

No news on when I may head home. I'm guessing early next week, but am not getting my hopes up, as that hasn't worked too well for me in the past. As always: We shall see, eh?

xo from you know where, A

Wednesday, April 07, 2010

Dang--another visit from the ENT unit

Today the Big News still holds--I am waiting for my rash to ramp down so my white blood cells can report for duty elsewhere. Alas, there's a relatively new rash on my arms, so I don't know how that is going to muddy matters. The good news is that they've been giving me something to keep the itching from driving me that last few meters to crazy, so I'm hoping it will all resolve ere long. We shall see.

There was one truly revolting news development today, though--yours truly had another one of her epic nosebleeds. At least it was only for a few hours, and an ear/nose/throat specialist came to my rescue fairly quickly. I will be a mouth breather for a while, but at least I'm able to do something but hold an ice pack-gauze combo to my nose. It's all about Progress here, people, even really, really small versions of it.

Methinks today's excitement also inspired another round of platelets as well as two units of blood. Right now, I'm also getting some extra phosphorus. Good to know I'm all set there....

Anyway, today's member of the Sweet Pea Patrol is Karen, who came bearing chocolate chip cookies baked by Sky. She also went to Whole Foods and picked up some food I could eat with a recently-packed schnoz (tapioca pudding and peanut butter and crackers), which kept the hunger gremlins at bay. Also owe Shwea's Aunt Mary a big Thank You for for getting our Bombshell her latest shots so she could also get her license. Happy day, Shwea's legit!

Now I'm watching "American Idol," which is something our gal Linder got me hooked on many moons ago, bless her heart.

W/love from the 21st floor, A

Monday, April 05, 2010

Ode to a blotch

Mondays bring news, and today's most mixed message was the fact that my face is becoming a white, blotchy mess means it's healing. Hooray!

As for my labs, most of my numbers are going in the right direction, but aren't quite where they want them to be (before they spring me, naturally).

And the consensus is that I have made some sort of response to the cytoxan (SP?), the new chemo they tried last week, but it does knock me down a bit, so they're going to wait a little while to try that again.

So, the latest plan is to start the Velcade up again next Monday (this is my week off from chemo) and once my numbers allow, they'll try the cytoxan again. As for the Revlamid (again SP?), the chemo that likely caused this hunka-hunka-burnin' rash, that may be back on my menu, too.

We'll cross that bridge......

Today's visiting sweet peas are Mary and Dawn, who not only brought me clean undies (which were becoming a rare and wonderful thing for yours truly) but also my latest bills and census form--as well as an edible supper. Here's to them!

And here's to you--love from Her Blotchiness (but it's a good blotchy, really)

Sunday, April 04, 2010

Easter review #2

Well, I just spent 20 minutes updating this blog to have it vanish into thin air (the hospital's wireless access is a twitchy beast).

So, let's keep this brief, just in case.

Lew visited this weekend bearing an Easter basket (courtesy of his mother-in-law) and a baseball cap from Lew & Donna's resort in Mexico. He left after giving me a bit of a brotherly pep talk, which was sweet. To balance all that out, he also took a picture of me in full rash mode, as I have found it helps to put cold washcloths over my head and neck--apparently it's a look that cried out for a photo.

The good news is Lew is very unlikely to put said photo on the Internet. Good news for me, anyway.

A couple of doctors stopped by today to say they think the rash means the chemo is working. Don't know quite what to make of that, but usually, more is revealed on Mondays. Stay tuned.

Lastly, a big tip o' the hat to Mary, Karen and Sky, who somehow found the tax info necessary to get yours truly an extension. Val's Joan figured out how to wrangle said extension, bless her heart, for the Tax Man Cometh whether I'm in the hospital or not. One less thing to worry about--happy day!!

Friday, April 02, 2010

April Fool's, indeed

Yesterday I was in a foul humor, no way around it. April 1, 2010 was the second anniversary of our learning that Linda had ovarian cancer, and to be in the midst of my own cancer treatment on the same day just added a grouch level over which I had no control.

So if you spoke to me yesterday and wondered what the snark was about, that's what the snark was about.

And I am still a very rash-ridden gal, which they say should ease soon. At the very least, the treatment that they think is causing the rash will be taking a break, so one hopes the welts will, too. That's a good thing, for these welts inspired a visit this midnight by a dermatology doc who needed pictures. Had I been in my right mind I would like to think I would have sent him packing, but I was so surprised by the request I let him shoot away.

Yes, I need to give up my milquetoasty ways and soon, this I know.

I had a new chemo agent the day before yesterday, too, which should help me get ahead some (or so we hope). My dear NP gave me two copies of a good book on myeloma that I am slowly making my way through. It's called "100 Questions and Answers About Myeloma," second edition. It's written by two specialists in the disease and an attorney who has myeloma and manages to do quite a bit (a little inspiration there).

Now I'm drinking an iced tea, for water tastes just terrible to me now. Woke up very, very thirsty, though, so I'm glad I had the tea on hand.

My dear doctors and nurse practitioner are working away on getting me ahead of the disease enough to head home; it's all just taking longer than I had hoped (recurrent theme #2,348). I hope they don't think I'm ungrateful for all of their efforts, I am. I just know that yesterday was a tough day on many fronts, and I am glad we're in the midst of April 2, even if it is 4:30 in the morning.

Karen is on the "job" today, which includes the glamor of making sure I have enough clean underwear for the rest of my stay (if that isn't friendship, what is?). Brother Lew is arriving on Saturday to keep me company until Sunday, which will be great, too. Lew's supposed status as older brother has been challenged a bit here--the nurses who were working here when he last visited couldn't quite believe he was 62, nor could they quite believe that he was my older brother. He acted too much like a younger one!

What to make of that, eh?

Well, I should try to get a little more sleep, perhaps. Hope that this finds you well and happy, wherever you are. With love from the 21st floor, Ann