The timing is good

Happily, my transfusions came to pass today, and I felt a boost afterward that carried me to lunch with Mary afterwards. We went to Bread Euphoria (my second time this week), which is fabulous.

My dear onc was supposed to see me while in the hospital, but he had to reschedule for tomorrow. He did have good news, so I don't mind--they drew blood before the transfusions and the numbers I need up to have some radiation were kind enough to go up!

So, tomorrow I have my first local radiation appointment, and while that's an odd thing to be happy about, I am. My lower back has begun to hurt more than a little, and in my limited experience, radiation reduces tumor pain nicely. The pain patch that was doing the trick is losing some of its power over the pain being generated by the growing tumors, so I'm trying a little of the morphine they prescribed for "break-through" pain (why they need these terms I can't tell you). Anyway, I took some earlier this week and it made me feel loopy and lousy (L&L), even though I shaved the suggested dose down quite a bit. Decided I'd rather hurt a little than feel L&L, you know? But today it hurt enough I tried another, smaller, dose, and I think it's helping. And no loops. (Well, out of the ordinary.)

Speaking of such things, my onc removed a pill from my ridiculously long roster today, which is welcome news. Taking pills seems to take up a lot of my day, so one less down the hatch is welcome.

Well, that's the big news. Hope you've had some good news yourself, and I'll have more coming soon. Hey, you never know. XO, Ann and Shwea

Belated update from a slightly deflated balloon

Sorry I've been on the quiet side, but it reflects what's going on--or not, actually--here. My energy level is still at a very low ebb, and it takes everything I've got just to walk myself out to the car (with a walker, for pity's sake).

This week the walks have just been for medical business, too--blood work at the local hospital and my local onc on Monday, the hospital today.

The tropical temperatures don't help, mind you, for heat saps me on a good day. But still, my get up and go.....

Worst is that today's trip was for naught, for adorable and promising as I think my new onc is, his office didn't order the right type of blood for today's planned transfusions. So, Karen dutifully dragged me up to the hospital, the nurse started my port, and then...we were sent back home. Sigh.

But I had her leave the port accessed, so this will remain a "one-poke" event (a very good thing), and I'm back on the schedule tomorrow at 8. Mary will be taking me this time, bless her. Here's hoping!

Since I don't have much energy, I'm really glad that the French Open is on--always love watching tennis, so I don't feel too bad about being a slug. Am also sooooo glad Linda and I decided to have central air installed when we bought this house, even though we thought it was a bit extravagant. Silly, even. Not this week, eh?

Other highlights this week include another Whopper, courtesy of my new burger-eating buddy from church; the arrival of the HDTV I decided I needed in the back bedroom (handy gal Karen set up the TV and Blue Ray for me; the HDTV cable box arrives next week); the return of Carmella and Barbara (and the pups) today (someone to watch over me makes certain family/friends very, very happy); and the arrival of treats from my cousin Mary and her Glenn (cookies!!) and an enormous array of fruit from sister Beth. (Sounds like a balanced diet to me.)

So I'm a bit pooped, but it may suggest the chemo is doing what it's supposed to, so for this I am grateful. Alas, doing what it is supposed to is a bit rougher business with this particular treatment, so it seems my deflation makes sense. And it's temporary.

Well, I think this is more than enough for one entry! Love to you from me and the incredibly inert blond mass we know as Shwea. xo, A

Accomodation day

When they said they were going to set me up with a comfortable chair at church, they weren't kidding. I sat in a vintage (over 30 years' old) Lazy Boy--with my feet up--at the end of the aisle, with a direct view of Pastor Andrea and the choir.

And I was silly comfy the whole time. How many churches would do that for the likes of me, I ask you? Incredible.

In the afternoon, I was visited by a group of sober friends who held a meeting in my home. I haven't been able to get to meetings for ages, perhaps since Linda got sick, so when this was offered to me I jumped at it. It was just what this gal needed, truly.

Then my cousin Pat, who I haven't spoken to in ages, called, and the day was complete. (Things are looking up for her, and that's the kind of news I can never get too much of.)

That's not all that happened today--Mary came by to tend the Bombshell and made me a sandwich, bless her heart. She also investigated the basement on my behalf, as I have promised not to toddle down there alone.

Last night around midnight, my hot water heater kicked in for a long run--since it's only supposed to run on demand, it was odd that it began running when I was in bed. Mary couldn't find anything, so I'm going to call the plumber to see if it "self cleanses" or some such nonsense on occasion.

Oh well, isn't there always something?

Signing off from a fabulous day, xo, Ann and Shwea

Happy, happy joy, joy! Oh, and silly.

While some days are not so great, some days (or portions thereof) were good. Great, even.

Thursday was a down, down day, but Friday was much, much better. Jo came by for a good visit in the morning. We talked about how her family was going to take in the Bombshell if my timeline is what it appears to be--she'll need a new home, and they are going to do make life very rich and interesting for our gal. At least that's how I hope it works out--hey, you do what you can and hope for the best, eh?

Then Pastor Andrea came by with lunch, and we talked about what's going on and what the church can do to aid and abet yours truly (for one thing, I'm going to have a comfortable chair to sit in tomorrow--hey, I am not one for special treatment, but my dear body can't sit in those pews) and to pray.

Then, because I hadn't had enough prayer and introspection, I had a session with my therapist, who has an incredible perspective on illness that helps so much now.

Boy, I sure know how to have a good time, eh?

Not to worry, my last event of the evening was that Barbara and Carmella took me out to a double-header lesbian film series at the Academy in town. There was a documentary called (I think) "Edie and Theya: A Long Engagement" followed by a hilarious documentary on a New Zealand phenom called "The Top Twins." One made me cry, one made me laugh--the Twins are going to be in town June 12, and I highly recommend you go see them. Country humor and silliness--by two big ol' lesbians. What's not to love? (I'd go, but it's going to be the sort of mob scene I'm supposed to avoid these days.)

Today has been another recovery day, but happily I'm not as flattened out as I was on Thursday. Barbara and Carmella went back to their new home outside of Boston today. Sorry to see them go, but they need to get their lives going on in earnest again. Can't' believe the stellar job that Carmella did a in the basement--it's like a whole new house down there! And Barbara took such lovely care of us all, Shwea included. Am going to miss them, but I think I'm good on my own for a while, anyway.

Before they left, Val and Joan came by to organize me even more (who knew it was possible?). Sky and Karen came by to check in on me, because they can't help themselves (and are so adorable about it), and now I'm home alone with the best dog ever. Oh, and Val--a sworn cat person--gave Shwea her big walk tonight, which I never would have believed if I hadn't seen it myself. What a sweet pea!

Watched yet another silly movie tonight--the "Tooth Fairy," of all things--and it was definitely a light bit of business, but I like that Rock fellow and Ashley Judd? Toss in Julie Andrews, and well.....

Rough day at the ranch

Today has been a low numbers day, and so I've been feeling low. Had two sets of doctors' appointments today and it wiped me right out--slept most of the afternoon and evening. Am now trying to take my last pills so I can go to sleep. A bleah day, alas.

Good sandwich! Appointments? So-so

Goddess bless Karen for making the drive to Boston today, for the weather was iffy and the traffic terrible. We were over a half-hour late to our appointments today, but it just couldn't be helped.

And we went out there for a procedure I can't have right now, anyway, so it wasn't a necessary Boston trip, after all. My blood counts are too low right now for any extraordinary procedures, apparently. Here's hoping we find that sort of thing out before we make the big trip next time (for Karen's/my driver's sake, if no one else). The best news was that they thought I could try to go without oxygen for a while--I may just wear it at night, but I might just avoid it altogether for as long as I can. We shall see....

I must say, however, I enjoyed my lunch today as I have not enjoyed lunch in ages. With apologies to my vegetarian and vegan friends, I had a cheesesteak sandwich and fries with a Coke at the MGH cafeteria that was just the thing. Heaven!

Then came home to find that my dear friends had the courage to cook the monster lasagna that has been filling the freezer lo these many days, perhaps weeks. Such brave souls!!

As for tomorrow, I get some radiation and meet with my local oncologist for the first time. So right now, TV beckons, and who can blame me? W/love from yours truly and the Blond to End All Blonds.

Haircut with (fu manchu) oxygen

Another good day

The drug I'm taking to reduce swelling appears to be working, for I woke up with even smaller feet than yesterday (hooray!). Still larger than usual, but I didn't feel as though I was lifting such serious weight when getting out of bed this a.m., which is good.

Slept late, for it is a perfect day for it--gray and overcast. Right now it's raining, which means holding down furniture is the job for now. I did take a slight walk out to the mailbox (woo!) after lunch, but that was about it. Tomorrow features a series of appointments in Boston, so I'm enjoying today's sloth while I may.

Barbara's in the kitchen making some sort of chicken curry deliciousness for dinner, Carmella's got a phone interview, and Shwea is snoozing (she's had supper already, what else should she be doing?). She had a rough day, as she and Max had a brief "discussion" during lunch that was upsetting for us all, but they seem to have worked things through for now--Shwea never did share for beans, even when she had a full-time brother, Linus. He deferred to her in all things, but Max hasn't learned that's the best way to go around here, and I don't expect him to--I think it's good for my Bombshell to have to share a little, even if she doesn't think so. (She'd be dialing the MSPCA if she could, this I know.)

As for me, I've been looking at TVs on the Internet, as I think I'd like to set up one in the back bedroom, but am having a heck of a time choosing a size/type of TV. It's crazy out there! Anybody have any suggestions regarding brands or sizes (I'm guessing HDTV is a must), do tell. I'm thinking 32 inch Sony Bravia right now, but am open to suggestion.

On other fronts, Val reports that United Airlines allowed me to cancel another flight due to illness, bless their hearts. I was supposed to visit my Aunt Lib in Nebraska during a family get-together this weekend, but as we know, circumstances rather got in the way of that plan. She's my mother's last living sibling, and is a hoot, so I'm sorry to miss this trip. And don't ask me if I feel worse about this trip than missing California and Hawaii in February--that wouldn t be fair.

So, that's the scoop for today. Hope all's well where you are, too, xo, Ann & Shwea

Monday can be fun, really

Had myself a major hair cut today, as my hair has been falling out a bit, and I wanted to beat it to the punch. Many thanks to Carmella, Barbara, Hilary and Ellen for their efforts in giving me quite the cut. Crew cut, but what's a girl to do? I love the fuzzy feel of my noggin', even if I have a slightly stark look. No pictures yet, but I'll let you know if one of the gals comes forth with one or two.

Didn't have the "fun" of a doctor's appointment today, but have a couple to look forward to later this week.

Speaking of fun, many, many thanks to sistah Joan for enduring the idiocy of eTrade on my behalf. She's helping me try to wrap up Linda's finances, and eTrade has been the lone holdout among Linda's "holdings," seeming to go out of their way to keep us from closing Linda's account there and moving on.

Oh well, t'is always something. And today, thankfully, it doesn't appear to be my health--I feel pretty darn good, today, actually, and am looking very forward to tonight's supper (Babs is cooking burgers!). Yum!

What a weekend!

My first weekend home has flown by, largely because I have been busy, busy, busy. Am so glad it's possible for me to be busy, busy, busy--that was by no means a sure thing not too long ago.

Had visiting dignitaries from D.C. (bro Lew) and NYC (friend Ellen), as well as a wonderful array of local friends stop by, and I can't think of a better way to be welcomed home.

Feel okay, if a few gallons/liters on the heavy side. Seems my "load" has lightened a bit from yesterday, which is good (it didn't take a crane to get my legs into the car this morning), so I'm hoping maybe this is a trend. Maybe?

Shwea and I are being kept company by Carmela and Barbara and their miniature Schnauzers this evening, and expect to have some sort of company for the foreseeable. I have Greta Garbo "I vant to be alone" moments, but it isn't really a good idea (and makes some key members of my family and friends twitchy), so company I have.

And I'm lucky to have it, this I know.

As for tomorrow, I meet with my local oncologist, and we'll get things going here.

So, life is good and busy and I feel okay--this is a report I am very happy to make, friends, esp. with my completely cashed-in Bombshell at my side. XO, A

Back home!

Just woke up from a dream I've been having a lot lately--or at least a variation on a dream I have been having. I am running through a raging rain storm through a rural landscape barely wrapped in some sheets. Never a runner in "real life," I seem to have an endless supply of energy to cover miles of terrain in the worst weather imaginable, but seem to be doing it all effortlessly.

What to make of that, eh?

But that's why I'm posting you dear people now--due to delays both at the hospital and on the highway, Val, Joan and yours truly didn't get home until after 8 p.m. (Many, many thanks to Val and Joan for waiting with me and taking me home, BTW.) Was overwhelmed by my Bombshell's welcome, as usual (she has a full-body wag that cracks me up), and was very touched by all work that had gone into preparing my home for my return by Deb/Carmella, Mary, Lynn and other generous souls.

The most notable addition to the house being the oxygen system that my lung condition requires. Thanks to that, yours truly is typing with a lovely loop of plastic on her noggin'--my look just gets better and better, eh? But since breathing is something I rather enjoy, I am going to work this look as long as I must.

Am feeling pretty good, if bloated--looking a little more like the Pillsbury Doughboy than I would like right now--but hope that medicine and getting around (and not just in sheets in my dreams) will help lighten my water load.

Saying a good-bye of sorts to my wonderful medical team at MGH was very hard--they really all worked so hard on my dear carcass, and while I certainly prefer to be home more than not, I am going to miss their incredible dedication, professionalism, and most of all, sweetness (yes, sweetness). Hope you never find yourself in need of MGH's services, but if you do, I can't recommend them enough.

Well, the birds are chirping in earnest, so I had better get back to bed if I'm going to get any more rest out of this first night home. Love from Northampton and the Goddess, A

The story--as far as I know it (consider the source)

Today was a parade--of doctors, medical students, fellows, friends, calls, clergy and a member of my own dear family. Like a parade, there was often too much going on to take in, so I don't think I'm going to even try to describe much in the way of details. The brain, she just doesn't work that way today--blame it on chemo (which I am currently hooked up to), blame it on overstimulation (note aforementioned parade), blame it on (infamous) Boston, whatever.

The most important development today was that I am going home tomorrow, but not with the special insert I mentioned yesterday. That's fine, as I'd rather be home than have the tube or whatever it is. Instead, they're going to clear out whatever needs clearing out tomorrow and send me home with an outpatient appointment for the official installation on Tuesday.

Next week, I also meet with my local oncologist to get my hometown chemo and radiation plan in place. My doc in Boston has pretty much signed me over to my Northampton doc, but as I understand it, the two hospitals have a consultation agreement which means they will keep in touch with one another as needed, and my Boston doc was kind enough to say they would love to see me. Sweet.

In sum, since the disease is so darn wily and pernicious, I'm finding myself on a different path--having treatment to improve my quality of life instead of going for remission gold. Stay tuned....

Counting down...

The preparation for moving my medical operations home continues. Tomorrow, I am scheduled to see if I can have a drain of sorts intalled in my left lung so it can be cleared out as needed. It depends on a number of factors beyond my control (the saga continues), and more will be revealed tomorrow. We shall see.

Today Saint Karen was on site, keeping me company and comforted. Also had a good talk with Keitheley (thank you, sweetie), Ann and Jo, the chaplin on staff and more. A lot of tears, sweetness, and frank discussions of mortality. Ain't we got fun?

Oh well....

True friends, tough information

Today began with my learning something along the lines of the fact that the pain in my lower back was indeed a number of tumors, I have some swelling around my spine that causes concern and there was an odd spot on my brain stem that they hope to look at with another MRI. They ordered that test this morning, and my nurse says to brace/prepare myself for an after-midnight pickup. If I'm Lucky, it will be around 5. If not....

As a result, I ended up speaking with a couple of radiologists and specialists in a number of blood-related cancer specialities, and it seems that what's next in the way of treatment for me.

Then, Sky, Karen, Joan and Val showed up, and I should have known that this meant Business. They wanted to talk to me about an e-mail exchange one of them had had with my primary oncologist that extracted some details I haven't heard but needed to. This, people, is why having several people to advocate for you a such a fabulous idea.

Even when the news is not good.

Seems that the problem I had with my left lung is extraordinarily rare (affecting about 1% of patients) and indicates a very fast-growing, high disease burden. How fast? My left lung could already be filled up again since being drained on Wednesday. It also means that it would be a miracle indeed if I could get my disease load down low enough to qualify for any kind of transplant.

This was backed up by yesterday's MRI, which showed a lot of tumors in a place that had appeared to be "clean" just a couple of months ago. My body did feel as though it took a turn for the worse this week, too--had a moment just a week or two before Linda died when a little voice in my head said, "You are pushing yourself to the brink--careful you don't go too far"). Somehow was able to work through that time, but it doesn't look good for me know.

Oh, well. With the future we may have before us (Tea Party-approved Congress comes to mind), this might not be a bad time to head to Rock 'n Roll Heaven. Of course, I still hope that the docs find some way to rein in my disease, and I'll have time to enjoy life for a good while, Sarah Palin or no Sarah Palin.

We shall see, dear people, we shall see. Monday's my next meeting with my big doc, and Karen and Sky will be here to advocate (lucky for me).

Yes, even though the latest news qualifies as terrible, "What's next?" is still a serious topic of conversation. There appears to be more interest in a completely different chemo regimen, most of it more traditional chemo that could knock the stuffing out of enough speedy S.O.B.s to improve my quality of life. So, there's a chance of some reprieve, but realistically, nothing like the extended remission that seemed so possible before we learned what kind of myeloma I had. Seems that continued treatment will be my ticket to time, nothing else.

I've cried quite a bit about this news today, as you can imagine. Was very grateful I had Val, Joan, Sky and Karen to cry in front of (even if I can't help be embarrassed by it). It took courage for them all to sit down and tell me this news, but they knew I wasn't getting it from my primary docs, and it was important. What friends, eh?

Am grateful too that the reality of the situation did not inspire any "wishful" thinking on the part of my friends, but instead inspired a lot of love, support, and hugs.

Prayers and well wishes are also coming in from outside Boston, so I'm being well taken care of on many fronts.

Love and hope abound, even if a little snark finds its way in here and there. XO, An

Back in my johnnie again!

This "week off" has officially been declared a dud. I am writing to you from my room on the 20th floor of MGH, where I await the "chariot" that will take me to my MRI.

My back and arms started to hurt last night, and the tightness in my midriff ratcheted up a notch or two this morning. I contacted one of my MM team this morning about it, and wouldn't you know, they wanted to see me--in person--ASAP.

Saint Karen drove me to Boston yet again, where my main doctor told me that the analysis of the fluid in my lungs showed it to be cancer-related, and this increase in pain was likely due to that, too.

In other words, the chemo I've been enjoying isn't really doing its job. So, they're starting me on another regimen on Sunday and it will likely keep me here until Friday or thereabouts.

Unless, of course, the MRI shows a mass that needs to get radiated.

Here's hoping they find nada, is all I can say. Radiation keeps me out of the treatment loop, and that won't help me much.

But if they do, they do, and I'll do whatever necessary to show the so-n-so the door.

Will let you know what's shaking tomorrow, promise.

On the good news front, I received my Stevie Wonder greatest hits compilation today. Think I'm going to listen to "Don't You Worry 'Bout a Thing" a few thousand times. xo, A

P.S.: Not to worry, Aunt Mary is making sure the Bombshell is being properly fed, walked and fussed over in my absence.

Not what I'd call a real week off....

Seems I wasn't feeling punk just because I needed a transfusion. Tuesday night, I felt as though my breathing was labored, and thanks to the helpful intervention of Sky and quick response from my MGH team, on Wednesday I was on my way to Boston to get my lungs checked. With (Saint) Karen.

Turns out I had fluid in a left lung, fluid that was removed in a process only slightly less barbaric than the nosebleed "solutions" I have endured this year. It was less awful than I imagined, but I still hope I never have to do that again.

A girl can dream, can't she?

We won't know what the possible cause of the fluid is until myriad tests have been run. For now, I'm happy to breathe a little easier--was beginning to feel as though I had donned a corset around my midsection. Not comfy, not comfy at all.

Today's transfusions left me tired, but I promised myself I'd update the blog before I'd allow myself to nap. Hope this perks me up eventually in some way/shape/form. The other person getting a transfusion in my room was a 75 year-old-man with leukemia. He said he wasn't ready to go yet--he still had a lot of things to do.

Amen, brother.

Lastly, Shwea had yet another test and it looks as though whatever is causing her to be sick and so forth is either allergy- or medicine-related. No signs of tumors or the equivalent. Hooray! I don't know what I'd do if she fell seriously ill, truly--just cleaning up after her each morning tests my endurance. Here's hoping we can get to the bottom of his and ease her delicate tummy soon.

Well, that is the latest, and a good nap is calling. Hope all is well with you, xo, Ann

If I wasn't already sober....

I sure would be now! Yesterday's meeting with the transplant doctor was a very informative, yet dispiriting, affair, though my friend Carmella helped keep things as positive as possible, bless her.

It sounds as though an auto-transplant (a bone marrow/stem cell transplant using my very own cells) is my best hope for an extensive remission. It is also remarkably safe--only a 1% mortality rate, per the doc.

The problem for your correspondent, however, is that to qualify for this transplant I not only have to have responded well to the chemo (and therefore have a lot of "good" cells to harvest), but all of my major organs have to be in great working order.

And for some reason, my kidneys don't currently fit that bill. They took quite a beating thanks to the myeloma cells, and so are not working as well as they should.

Whether they can be in peak working order so I can proceed with the transplant is up in the air. My primary doc in Boston said it all depends on how well the chemo works--and my response to it.

And we all know what kind of influence I have over that ! (Rip-roaring rash, anyone?)

But there are a few things I can do to help my kidneys feel better about things, and that means continuing to drink water like it's going out of style (2-3 liters a day) and eating a low, low potassium diet.

In case you're wondering, I did ask my dear doc whether I have options beyond the transplant if I don't qualify, and I do. So all is not lost.

But it seems that from what I've learned, this transplant gives me the best shot at a decent lease on life, so here's hoping we can turn things around.

Also learned yesterday that I need a blood transfusion, which explains why I've been feeling tired on tired of late (it wasn't church, it was my hemoglobin!). Expect a call from my local doc today as to when I can get quite literally hooked up.

Lastly, yesterday our dear Shwea had a rough morning, so I decided she should have the extra tests our vet suggests. She's there now, thanks to Aunt Mary, and I probably won't hear until late this afternoon what, if anything, they've found.

So I'm in a dither, but my dog is in the thick of things right now--any kind and healing thoughts you have, please send them Shwea's way. xo, Ann

Alley Oop, Oop, Oop, Oop-Oop

This morning I was enjoying a fabulous breakfast (waffles with blueberries and turkey bacon on the side--heaven!), when I noticed a curly obstruction in my line of sight. At first I was afraid I was having a recurrence of an eye problem I had in the hospital, but then it became clear that the obstruction was an exterior problem, an eyebrow run amok.

Upon closer inspection, I was slightly aghast to see that my eyebrows had decided to let their inner freak fly, and my browline was giving Andy Rooney (not to mention Alley Oop) a run for the money.

So, I tidied things up, but thanks to the mirror noted that my face is covered with a peach fuzz that I'm guessing is steroid-related. Nice touch, that. But then, my face is no longer covered with an angry red rash, so this qualifies as an improvement in my book.

Vanity is never one's friend, but when one is on more drugs than Heinz has pickles, vanity is just a heartache waiting to happen.

Still, I am feeling pretty darn well today, even though it was a no-steroid day. Yesterday was supposed to be my "go get 'em!" day, but steroids or not, I was too tired to do much of anything. While I had all sorts of plans, I didn't do much but feed myself and Shwea and nap. Sheesh! Today, on the other hand, I have already deforested my brows and took a walk around the house. Not bad....

Alas, I wish I knew today was going to be a "good day" sooner. I might be at our local Pride March now instead. It's a gorgeous day, and I bet my GLBT friends are having a grand old time. Think this may be the first Pride I've missed since we moved here in '96, but I hope to be back next year. In honor of the day, I'm wearing an ancient rainbow t-shirt and my purple Crocs. And, of course, thinking gay thoughts as often as I can (I listened to Joan Armatrading this morning for extra inspiration).

Yes, I think gay thoughts every day, but one does what one can.

And for those of you who inquired about Shwea, she's doing much better, thanks. Her vet reports her infection/cold appears to be going away (if not gone) thanks to the meds she's on, and except for an occasional cough is her old self. If the cough doesn't go away by Monday or Tuesday, we may be getting her an x-ray or two, but I'm hoping it doesn't come to that. All and all, the Bombshell is much improved--hooray!

So yes, it's a good day all around, and I hope you're enjoying it, too. Love from us both, Ann