Sure hope I didn't leave anyone out. So the names there in the title are the teams that will be following me now, in addition to my pulmonologist, my hematology oncologist, my ophthalmologist, and my PCP.

Remember all that face, head, and neck swelling back in January? Blood clot. And all the swelling since has been that same blood clot getting larger and worse. And when my right hand swelled to the size of a boxing glove on Friday ... I figured something was up. I went to the ER, where they confirmed clot with an ultrasound. I thought and then almost choked on the thought as I had it: a lot of my friends are doing this, they're just looking at their babies on the screen, not their blood vessels. They started me right away on a Heparin drip, said I really ought have come in on Thursday, and sent me upstairs to 6B. Since IR was who I needed, and they did their best work during the week, I cooled my heels until Monday.

My surgeon's name was Paula, and she slid a catheter up through my femoral vein (right by your hip), heading for my superior vena cava (SVC) and other veins of the head/arm/etc. But she couldn't get there. Veins from my heart were completely occluded on both the right and the left. Paula took my port out, and then sent me back to my room for an imaging study. I was completely conscious for this entire procedure, and it was really cool. I could feel the catheter moving through my veins inside, and Paula talked to me while she was working on me. And while I loved that part of it, the rest I hated. I was so angry and upset after the surgery that I sobbed for about eight hours straight, and barked like a junkyard dog at anyone who got near me. The surgeon got a little of it. My mother did. The recovery room nurse did, and so did the nurses who received me back on 6B. They called the attending, and I gave him some of it, even though he was trying his best to calm me down. I called up my sister and gave her some of it. I finally accepted some morphine and Ativan and that turned off the waterworks. Good thing, since it was time for the imaging study.

They wanted an MRV (an MRI of the vascular system). They took me at about ten and parked me outside the room for an hour and a half. Then into the MRI. I'd never had one, and I knew they were close, but I didn't know you were literally stuffed into the thing, like a hot dog into a bun. It was none too comfortable, especially since I had already been lying flat on my back for over ten hours (for the surgery, then the recovery, then four hours post-op to prevent femoral hemorrhage). When we had a malfunction of the IV in my right arm, they made me stay in the exact same position while we waited for the IV team. But I couldn't do it. I called uncle and they brought down my nurse, who explained that she'd give me some pain medication if I came out in the hall - she couldn't go into the MRI room because she'd had a facelift and had metal clips in her head. Awesome. MRV finally ended about one, and I got right to sleep.

They spent all day Tuesday figuring out what to do with me, since the MRV showed that nearly half the veins in my upper body were completely occluded by this one roaring great clot. It was nothing new, and had been going on since before this January, for sure. And this is something I don't get. If it was there in January, why didn't January's CT scan (which I got to scan for blood clots) show it? Likewise February's venogram? Sigh.

I went back to IR on Wednesday. Paula had brought in backup, her old mentor and expert-like dude. Together, they pulled some really cool stuff, and managed to get a stent into my SVC just above the heart. Paula had a catheter in through my brachiocephalic vein (left arm) with the stent on it and a loop on the end. He had a catheter with a needle and a bit of a hook on it, which he threaded through the femoral and up to my heart, then through the heart with the needle, to meet her catheter and hook it and pull the stent down into my SVC. They also cleared out as much of the clot as possible on the left, and placed two or three more stents on that side. All in all, the surgery took over six hours, but they had much success.

The difference was immediate. Within minutes, my face was less swollen, and within hours, my eyes were back to normal shape. My cheekbones and jawlines reemerged. I couldn't believe how I looked in the mirror. Hey! My face is back! So that's the good news.

Okay, ready? Bad news is that they couldn't do anything on the right. Clot was too big. I had always sort of expected to hear the words, "I'm sorry, there's nothing more we can do," from my oncologist ... but not a different doctor. So it was strange to hear it from IR. My right arm is still incredibly swollen, and they've wrapped it in compression wraps to be worn 24 hours daily. I'll have therapy to massage the arm and re-wrap it, and try to work down the swelling. After 3-4 weeks in wraps, I'll have a compression sleeve to wear on that arm. How long will that last? Well ... forever.

I'll also be on Coumadin, a blood thinner, forever. Coumadin's a tricky little drug, with lots of interactions and lots of special considerations - like if I cut myself shaving, I might bleed for twenty minutes. For this week while my body adjusts to the Coumadin, I'm also giving myself injections of Lovenox, another blood thinner. It's not difficult, and I don't mind doing it - I can't even feel it, really. Plus I get my own red biohazard sharps container.

So that's it, folks. Lots more doctor visits and things coming up; in fact, the visiting nurse was here today to help us wrap the arm. But I'm not dead (if I even was close - not sure) and I'm basically just fine. Picnic in the park WILL continue on July 4 as planned ... so be there and you can see my arm set-up. It's hot. Literally.

Here's a postcard I got from Latvia (through PostCrossing).

Translation: Sexy or not, you still shine!

*kick in the pants

Thanks a million to everyone who came to the Dexter Pub on our LLS/TNT fundraising day. In short, the fundraiser rose over $1000 altogether, and we were thrilled to say that with one more contribution (from my very generous bosses), Becky made it to her big goal of $5000 and then some! Here's an update on the progress in Becky's words: http://beckybmw.livejournal.com/256776.html. If you'd like to read a bit I wrote about gratitude, see this week's Dexter Leader. (I'd link here, but the article did not make the online edition, it seems.)

More good news: As of a date this or last week (we're a little fuzzy on details, here), I'm hired permanently at my old job. And since I love this job, I'm quite pleased. Having been assured of a steady income, I've already started to do things that have been backburnered because of lack of funds ... like rejoining the gym and repairing my car. Which apparently needs over $900 worth of work. Sigh.

Still and all, I'm busy all the time and happy about it. While I wouldn't call photography a hobby of mine (at all), I've been taking many more pictures than usual and having a lot of fun with that. Picked up my bridesmaid's gown from the shop, and it still fits great. Discussed tie and vest options with Georgia and Chris over backyard bbq with Gram. Wedding crazy has calmed down for the time being, and everybody is even all set with what to wear and what to give at my cousin's wedding in a couple weeks. AND I made it through the whole month of April without going to a funeral. Life is good.

I had a CT scan a couple of weeks ago, and saw the doctor last Friday. Everything is stable, and stable is good.

I'm busy! Still working full-time at my old job, and I'm still temporary. Perhaps now that NB has found and purchased his new home, he'll finish up the search to fill my position. I asked him, with a grin, to put my resume on the top of the pile. He promised he would.

I've been PostCrossing, and I highly recommend it to everyone. See here: http://www.postcrossing.com/user/chimalis. I've also resumed lending at Kiva, and I recommend that to everyone, too. See here: http://www.kiva.org/lender/abigailfisher. And for my third website link of the day ... Lewis Black in Mt. Pleasant. Anyone want to go?

One silver thing about cancer is that you make a lot of new friends, and they all turn out to be remarkable people. Such is the case with my friend in Utah, Shawna Fisher. She's no relation, but I'd be proud to claim it. Shawna had a bone marrow transplant (from a donor) to treat her non-Hodgkin's lymphoma and dealt with myriad complications with an amazing spirit throughout. She gave me permission to publish an email she sent here in my blog, and I hope you read it. I loved it.

( April 15 - My ReBirthday )

Shawna has recently decided to change her name. Her choice of last name is Phoenix. Shawna - no kidding! Keep on fighting, friend.

First things first - me and beckybmw are stars! Check it out: http://www.dexterleader.com/stories/041609/loc_20090416003.shtml

Okay, now. Like the article says, there's a fundraiser for Becky's race for LLS at the Dexter Pub on April 26. Come out, have a drink or two, visit with me, and raise money for a cancer foundation that rescued me time and time again over the past year and a half. If the fundraiser alone isn't enough to get you out of the house, you can come to my band concert that same day at 3pm at Dexter High School. We are playing some awesome pieces and even though Emperor Waltz is long, the West Side Story Symphonic Dance Music will totally make up for it. People! The concert is free. See, you have no excuse.

The bighead thing seems to have solved itself. Which is good, because I wasn't sure how much more prednisone I could take. The oncologist said he couldn't think of a reason I would be all bighead, that we couldn't find a clot with either a CT or a venogram and that my blood counts had been tested for everything and looked A-OK. Basically: "we don't know why, and since it's gone, we don't care unless it happens again." Fine with me, I just like having my semi-normal face back. And upon hearing this news, the allergist agreed to lower my steroid dose but then announced that oftentimes this much prednisone for this long causes osteroporosis at some level. I've never had a bone density scan before, but I get one now! In five weeks, I should be back to a small enough steroid dose that the side effects are gone. Can't wait for that.

And now for the good news: I haven't been telling you this for fear of possibly jinxing this, but now I am telling you this, because it's looking more promising than jinxed: I got a job. Furthermore, I got my old job _back_. Which is absolutely awesome. Because I loved that job, and having had to leave that job was haunting me. SO I AM REALLY HAPPY ABOUT IT! I've been back there temporarily for two weeks now, and I believe that steps are being taken to rectify that "temporary" bit. Whee!

Getting the job was a big check mark on my to-do list. See, January was so miserable that I vowed to get some stuff done, for goodness' sake, in February. So I have filed my taxes, gotten the refund, and delivered it and all paperwork necessary for the bankruptcy to my attorney. I meet with him on Friday to nail it all down. And I've quit my Tuesday night support group, which was NOT an easy decision, in favor of a Monday day group whose members have prognoses more similar to my own. And I've quit my cancer writers' group, which was falling apart anyway, in favor of rejoining the Dexter Community Band, and I must admit that I _love_ playing again. And I've gotten a job, and might get a paycheck soon. And really, the pretending-remission-even-though-no-one-will-say-it thing is going swimmingly. Jill even shared $5 of her Bunco winnings with me last night, and I plan to spend it on pub fries after tonight's rehearsal. So there.

The mystery cause of my bighead syndrome is still, well, a mystery. Allergy tests, while very fun, were negative except for one thing. I'm allergic to dust mites. Well, who's NOT? So I bounced back to the oncologist. He admitted to being pretty much clueless while defending me that the swelling "is really there, we can see it on the scan". He wants a venogram because he still can't completely rule out a clot. All I know about venograms - which is a lot, now that I think about it - I learned from watching House. Also I think that this will completely round things out for me such that I will have had every single radiologic procedure available at some point in my life.

The steroids have me in a frenzy. I can't sleep and was up until 7am last night, staring at the wallpaper and listening to the cat squawk. My hands and feet and face are crazy swollen and I want to eat everything in sight and I'm constantly just a little bit ON EDGE. I'm going to call the allergist today and be quite persuasive about why I should start lowering the prednisone dose already.

Also this week, Mom has been laid out by some sort of bronchitis and has demanded that I bring her tea in bed on the half hour and fetch medicines from the pharmacy. She also demanded bean soup - yes, more bean soup - which I made and she pronounced "excellent". And I made her some cranberry orange bread and chocolate peppermint bread and brought them in bed and attempted a crossword puzzle that we both found impossible and played several hands of gin rummy, which I am patently incapable of winning.

And also this week, I just went and did it already and got on with filing bankruptcy. I googled A2 banko attorneys and called demanding to know the fee schedule. Then I called back and asked other offices about the guy with the lowest price. They agreed he was a stand-up fella, and so did my other sources, and I met with him and you know? He has squirrels at his house too. He pulled out his cell phone and showed me a picture of one on top of his curtain rod, and I then regaled him with the tale of my Beeble predecessor's actual pet squirrel. And he lowered his price by $100 because we were such good friends, so it's off to the races as soon as my tax refund appears and I can pay.

Lastly, I am very strongly considering a reprise of my pizza delivery job. Is this totally stupid?

First, the second opinion news. Karmanos doctor and colleagues did not find "anything juicy enough to biospy" after their close review of my scans and things. While I was hoping for a biopsy and therefore a determination of whether or not cancer was in remission, I interpret this as good news. If no one can find anything that looks cancer-ish enough to justify surgery, then maybe it's not cancer-ish at all. I guess I can jump ahead a bit in the next story to tell you this, too, which is not much different for me mentally than the above news, but which might put a smile on some faces out there. My regular oncologist told me when I saw him this Friday: "technically, you are in remission". Well, hot damn. the thing is, nothing is really different. No one knows that I'm in remission for a fact, and no one knows how long said remission will last. I guess I'm confused by this fact: If I was found to have cancer right now, would that be called a recurrence? I'm pretty sure not. I'm pretty sure that'd be called chemo was unsuccessful, which would mean I never really was in remission at all. So ... by me, the jury's still out.

Second, OMG huge face. I might have provided this news to you about the second opinion more quickly, but for the past week and a half I have been trying to chase down the reason why my head and neck are so unbelievably swollen and sometimes actually quite purple. At times, my lips turn blue, my eyes are nearly swollen shut, and my ears constantly feel like I'm on a landing airplane. I saw my family doctor a week ago, who instead of saying "hello" on entering the room, said, "Oh my GoD!" and covered her mouth. Her ideas were Benadryl (no help), Keflex (no help), and a CT scan to rule out blood clots. Stat. No blood clot, but I never got better. So I tried the ER. Their idea was to jump my steroid dose to sixteen times what I had been taking. Oh, awesome! Not only has it not helped, but the hot flashes and insomnia and all the other steroid delights are ba-ack! So I tried the oncologist. It could be a couple rare, wacky things related to the lymphoma or the treatment, but we need to rule out allergy first. SO. I'm off to the allergist (which my German doctor pronounces as "ologist", thoroughly confusing me for a while) on Wednesday.

In the meantime ... I attempt to keep the insanity at bay. And I look for jobs. The temp agencies I'm with don't seem to have anything, and I believe them. The town is sadly devoid of help-wanted signs. Not to mention that this past week, I haven't felt like I could look a potential employer in the eye and tell him/her, with my enormous blue face, that all my medical problems are over and I'm totally reliable. But I'm working on it. I'm working on a lot of stuff, and even though it may appear that I am not getting anywhere, I keep telling myself these two things. 1. Some of these accomplishments of mine are not externally visible. 2. Baby steps.

Baby steps out of the office. Baby steps down the hall. Baby steps into the elevator. Baby steps into the elevator. Baby steps ...

I went on Monday for an appointment at Karmanos Cancer Center in downtown Detroit for a second opinion. I really liked the doctor there, and while he didn't give me any information I didn't already have, he explained a lot more detail to me and answered some of my questions much more thoroughly. He didn't say that a biopsy wasn't possible, and I expect to hear back from him next week, once he and the radiologists and surgeons have looked at my scans together.

And now, the very exciting news! My friend Becky Wiechman has joined the Leukemia and Lymphoma Society's Team in Training and is running to raise money for LLS. Becky will be running in the Mayor's Midnight Sun Half-Marathon in Anchorage, Alaska. Becky and I have been good pals since 5th grade, and I feel incredibly honored that she's doing this with me in mind! LLS has helped me tremendously during my cancer experiences, and I support them a hundred percent. If you'd like to help Becky and I raise some money for LLS, you can donate here:

http://pages.teamintraining.org/mi/anchor09/rwiechman

It's quick, secure, and tax deductible. I know that in this economic environment, extra money can be hard to come by, but small amounts go a long way, too. If you have 5 or 10 extra dollars this month, please consider sharing it with LLS!

Temp agency thinks they have something for me - good.

Appointment at Karmanos Cancer Center Monday for second opinion - better.

Finally completing a full six loads of laundry that has been hanging round my room for MONTHS - best. I didn't even remember I HAD some of those clothes.

Here is some medical news. It's short and sweet, and not what anyone wanted to hear. Between when my oncologist told me over the phone that we WOULD be doing a January biospy and when I saw him in his office just before Christmas, he changed his mind. I am not sure what changed his mind, but I can guess that it was the weekly roundtable the hematology/oncology department has in which all doctors review each case and give their opinions on treatment for each patient. AND ... I'm on watch-and-wait for the next four months. I have a CT scan scheduled for April.

Watch and Wait is not uncommon for non-Hodgkin's lymphoma, but I don't have NHL. It's definitely not standard course for my disease. Then again, nothing really has been standard with my case. What w&w generally means is that cancer is present but stable. Cancer is not aggressively active or perhaps not particularly actibe at all. What I interpret this course of action by the doctor to mean is that I am not in imminent cancer danger, but I'm not out of the woods yet. The longer these nodes remain stable, the better. So ... watch and wait.

My reaction to this is total confusion. I am certainly not going to bum around not working any more just waiting for treatment, even though everyone keeps telling me treatment is imminent - because everyone then keeps changing their minds. So. I am of two minds on whether or not a second opinion is the way to go. I could probably pressure another doctor at another hospital to give me a biopsy ... but then that doctor would be my doctor, and my care would be at that hospital, and I am not sure switching right now is a good idea. On the other hand, it's likely I'd finally have an answer. On top of that, I'm going to start working again. I am of two minds on this as well. Some of me wants to start temping through an agency again, like I did when I first moved back to Ann Arbor. I made decent money for temping, never got bored, and didn't have to worry about committing to a job that might not be right for me. Some of me wants to just commence pretending remission and go for it! and call up the old boss and ask him if he has anything for me, and get some semblance of normalcy going again.

I am not sure on the second opinion. I am not sure on the job front. But I am mulling all of it over as I wait for Monday. On Monday, I will be making a number of phone calls and getting moving on this stuff. Sometimes I think it doesn't even matter what I decide, just that I DO decide and start some forward momentum. It's really been unfun hanging out here in limbo, and I'm ready.

As I mentioned, everyone keeps saying, "Well, you look great!" after asking me how I am and hearing my answer ... regardless of what my answer is. So I thought I would share my beauty routine these days.

1. Lots of sleep. I'd say add three to your current hours of sleep and you'll have about what I'm doing these days. Reasons to sleep that much could be cancer, depression, or my body's actually gone into hibernation mode since it's between 50 and 55 in my room upstairs. Anyway, lots of sleep. I mean, they don't call it "beauty sleep" for nothing.
2. Anemia. It gives you that lovely flawless pale skin. And vapirism is so in right now, anyway.
3. Glaucoma. The eyedrops I'm prescribed have given me monster eyelashes, just like the magazine ads claim you will get if you use Maybelline Super XXXL mascara. They've also darkened my eye color and given me x-ray vision. Okay, not the vision.
4. Prednisone. The steroids give me a healthy red glow in the cheeks ... and does it feel hot in here to anyone else?
5. Chemo. Now, this might seem drastic, but it has some big benefits. Yes, your hair falls out ... but it comes back MUCH better than ever before - it's soft and feathery, and curls like a dream! Yes, your skin gets a little dry like sandpaper - but you never have to worry about acne again!

See folks - you too can have "cancer chic". Hey, it could happen. It's not quite as crazy as heroin chic, which totally became a thing.

"If it's bad, they call you, right?" I asked a couple of people on Tuesday, while I was waiting. Yep, apparently. My oncologist called from his direct line less than 36 hours after the scan to tell me that results from both PET and CT are the same as they were in August. That means I still have enlarged lymph nodes both in chest and in armpits, and that my PET still is somewhat reactive in those areas. At this point, you'd be straining to come up with a non-cancer explanation for both, especially the PET, so it's off to a biopsy with me. I'll see the doctor as scheduled on the 19th, and we'll plan a surgery then, probably for early January. They'll excise a lymph node from under my right arm and have a look under the microscope. If they see any cancer running around in there, then it's time to plan for a bone marrow transplant.

I'm ... a bit mad at myself for feeling so devastated. But I'm a bit unsure that this wasn't more the other shoe dropping or even the icing on the cake. I haven't been fighting off depression very well for these past three months, so that may be a lionshare of my current total gothmoodiness. I have to laugh at myself and all this stuff, because there simply is nothing else to do. I wished these results would be different - that there'd be smaller nodes, less PET activity ... but I did know they wouldn't be.

Onward and upward. I've been cooking up some thoughtful stuff lately, and it may be out of the oven soon. Stay tuned.

I will be celebrating an extra holiday this season, by the way: Scan Day. On December 1, I get both an HRCT scan and a PET scan.

One's a high-resolution scan of my chest so we can compare the size of my lymph nodes now to their size in August and in May. One's a postiron emission scan, where they shoot me up with cool glow-in-the-scanner radioactive stuff and see where there's metabolic activity.

My last few scans were inconclusive. See, my lymph nodes DID get smaller between May and August. The reason for them shrinking is the high, high doses of steroids I was taking. But the enlarged nodes could have been that way because of my lung inflammation, which the steroids would have helped. Or they could have been that way because of cancer, which, again, the steroids would have helped. And the last PET scan did show action in the chest lymph nodes - but "minimal" action.

These December 1 scans will lead us to either a biopsy (and probably a BMT) OR that word I hate saying because damn it, it might jinx it: remission.

I thought perhaps that November 15 would be the day this month I'd be most proud to be alive. In my own head, I've been looking ahead to this birthday, getting ready to count it as a year's worth of victory over cancer.

Instead, I believe today is the day I am most proud to be alive. Tonight I am incredibly inspired by the rising of my country to the occasion. Tonight I am much closer to defining "patriotism" than I ever have been before. Like others, I imagine telling stories about this election to youngsters in my old age, and I am overwhelmed with pride and hope.

Happy Election Day, America. Way to go.

I am in the throes of the October crisis. Don't worry; it happens every year. Here's some health news.

Today the pulmonologist said she was "very pleased - and I'm hard to please" with my breathing test scores and scheduled me a for a high-res CT on December 1. Apparently I will be taking 5mg of prednisone for the foreseeable future. Mom told her how sick and tired we are of waiting and waiting, and the pulmonologist is going to get in touch with the oncologist tonight, so they can coordinate. I am not sure what they'll come up with between the two of them, but I suspect one of these: 1. nothing new (bad) 2. a PET scan on top of the CT (good) or 3. a biopsy (best). As things currently stand, it means still more waiting, but Dec 1 is sooner than Dec 19 and hey, 5mg isn't so bad. Even got my flu shot today.

I will probably post some time soon about reasons to suspect the r-word and reasons to suspect otherwise. Bear with me; I have no home internet connection and I can only escape to one every so often. I will probably also post after Thursday's bone marrow transplant Q and A session.

Just so we're clear ... current mood: DAMN tired of waiting and not knowing. And DAMN fired up for six more weeks of it.