First Ixempra yesterday

My oncologist was wavering about giving me the Ixempra for a couple of reasons. She was at the breast cancer conference last week, and heard some anecdotal evidence where folks getting the 3 weeks on, 1 week off dosage (which is new and not yet "approved) had extreme fatigue as well as the usual side effects (nausea, hair loss, peripheral neuropathy). The way they put it was "too tired to blink". She wanted me to go to another treatment with a mixture of 3 drugs, two of which would be delivered 24x7 via a pump and a PICC line. There were a couple of other choices, too, one of which was an oral chemo, but with my tendency to vomit, she thought that was out of the question.
Basically, my view is that quality of life is not as important right now as extension of life. I want this drug to reduce the tumors immediately because that is the biggest threat to me and the size of my liver is in fact causing more quality of life problems right now. So I said, let's try the Ixempra and see how I do with it. So far, so good. I still am having the PICC line installed tomorrow, because they are having more and more problems accessing my veins each time.
On a more positive note, the clavicle infection seems to be clearing up. I have much greater range of movement in my arms/shoulders, and I have resumed the reduction in the fentanyl patch. Originally I was at 200 mcg, spent a while at 150 mcg, and have now moved to 125. I figure that in 5 weeks or so, assuming that everything goes ok, I will be off the patch altogether.

Long time since last post, I know

But I am uncomfortable at the computer, and have not had anything positive to post. Here's an update, in a nutshell...
a) I had a biopsy done of the infected area. They chose not to use any anesthesia for it, so it was excrutiatingly painful. Anyhow, it's a pseudomnas infection & I'm on Cipro for the next month.
b) I have had some progression. My liver tumors have enlarged the liver to the extent that even I can feel it and the stitch is back, inhibiting my ability to breathe deeply or even yawn without pain. The liver enzyme numbers are close to what they were when I was diagnosed in April.
c) I will start a new chemo - Ixempra - if my liver #s are good enough, Navelbine if they are not, and hopefully that will start this week or next.

Doing better all the time

Off the Bactrim & Kytril, tapering off the decadron. My head is much clearer and I am starting to have a little more energy. I do still have the clavicle pain and swelling but I am controlling it ok with the pain meds I have. I have to nap every day and I can't take on more than one or two errands or outings in one day yet, but I am building up to the bat mitzvah and I think I'll be ok for that. I may need to rest in between, and the Alger House has a little lounge upstairs that I may take advantage of from time to time during the event.

So, probably not an infection, but we don't know more

The ct scan came back, and Dr Wetherbee said that there's nothing there that he would see as consistent with an ongoing infection - no pockets of material (pus), no signs of toxins, fever, etc etc. He is going to hook up with my oncologist on Monday to go over his thoughts. Meanwhile, I am to stay on the Bactrim and other meds. The swelling and pain persist but are not so debilitating as they had been, so I figure I'll just live with it for now until we figure out if it's something important or not. Glad it's not an infection, was not looking forward to having to worry about where that was going.

New CT scan tomorrow

Looks like it is infection, Dr Wetherbee is sending me for new imaging study to get a better sense of what's what. I may need some sort of procedure to drain the infection, will know more after tomorrow's scan. Meanwhile, I am staying on the Bactrim, etc.

Infection's back...we think

The swelling & pain are back, have migrated to the right shoulder. I don't know if it's because I was using the arms more, or because we started to "step down" on the pain patches and steroids, which may have been masking the underlying infection, or what. I am going to see an infectious diseases specialist tomorrow, but it looks like I'm going back on the Bactrim. This time, we're not going to let the side effects run my life, so I'll be back on the steroids and kytril. Will post more when I see the new doctor.

Doing great

Here's how things are different from a couple weeks back: I can read (mostly magazines, still) , do my logic puzzles, watch TV without losing track of what's going on, get calls made and get things done. I am eating just fine -- but with the decadron, I have to resist the urge to just pull the chair up to the fridge and settle in for the day!! My mood has been significantly better, and I have been able to be much more present for Alix and Albert. Very happy about all of the above.

Update - good news

I had a brain MRI yesterday to rule out any tumors there that might have been causing the vomiting & some other symptoms. Results back today, no tumors (whew....). Saw the surgeon this morning, looks like the hole in my chest is closing nicely, he doesn't need to see me again until I am ready for a replacement port. Hopefully we can put that off a long while. Next chemo not til the 23rd of October.
So, a good news day! Healthy happy sukkot to all.

Ups and downs

I had chemo last Monday which went ok, and we decided to stop the neurontin, which wasn't doing anything positive and might have been adding to the nausea. Not sure if that was true or not -- have been terribly sick all this week -- but the withdrawal from the neurontin was its own nightmare. Anxiety attacks, insomnia, you name it, on top of constant nausea. According to Ruth, the nausea is not related to the chemo, but if not that, then what? Finally came up with a new combo-- decadron (a steroid) combined with kytril (an anti-nausea pill) which has given me a couple of good days. Fingers still crossed. Weight fluctuating, but at my lowest yesterday, it was 53 lbs from my starting weight in April. Gatorade is my new best friend.
Hair seems to be growing in, unexpectedly. Short thin fuzz, mostly gray. Will try to post more as I feel better.

OK, the "real" Amy is back

Doing SIGNIFICANTLY better the last day or so. Nausea is reduced to occasional queasiness, pain under control, energy level improving. I somehow turned into a totally different person for a while there, which was strange, to say the least. But I think you have the real me back...
I think that next week I am asking for the anti-nausea pre-meds before the chemo, because I was already week from the chemo related nausea before I started on the Bactrim, the combination of which was devastating.
We're working through the remaining details of the bat mitzvah, and I am starting to think this party will actually turn out ok. Of course, none of us have clothes yet, so maybe I should have put "clothing optional" on the invites.....

Not getting to the computer much

The stuff they have me on makes it difficult for me to focus so I'm not online much. I hope the antibiotics are working, but I feel pretty nauseated, weak, dizzy. Down 7 or 8 pounds this week.

Mostly good news

I saw the surgeon on Monday for a checkup and Ruth on Tuesday for chemo. Albert & I stressed to each of them that we want to treat whatever has been causing this pain that I've been having for more than a month, and not just keep taking the pain meds forever. The surgeon suggested that there may be an infection in the clavicle, and Ruth wanted to rule out a tumor, so she sent me for a CT scan on Tuesday. Good news is a) no tumor and b) no bone infection. Either of those would have meant 6 weeks of treatment, either daily radiation or daily IV antibiotics. Ruth and the radiologist are pretty sure that there is an infection in the soft tissue around the clavicle, and she is working with the infectious diseases folks to figure out whether to take a culture (which they do under CT guidance, argghh, more procedures) to determine what the infection is or treat "empirically", and just throw antibiotics at it. Will know more today. Other good news is that the first Gemzar/Carboplatin treatment brought the liver numbers back down to about 1000, from 4000. Good sign.

Catching up

Not too much to report this week... we had painters in all week and all they accomplished was the kitchen & bathroom. There was a lot of plastering needed. It really disrupted our day-to-day lives so we are not sure when we want to schedule the rest of the apartment. We also had intended to get the invitations to the bat mitzvah out already but now it looks like Monday. Arghh. I had lunch on Monday with my "lunch club" from work. It was great to see the crew again, and I can't wait to be able to do this regularly.
On the health front, Albert had a clean PET CT, for which we are grateful. The wound is starting to show signs of closure, and the pain has been pretty manageable. I have to say, though, that my ability to get around and do things is still very much diminished. I'm going to ask Ruth to refer me to another doctor who can address the underlying condition-- maybe a neurologist -- so that I can find out if there's something I can do besides pain control. Maybe there are exercises or massages that will help the inflammation heal faster.

Doing better

I think we may have finally gotten the pain under control (hope I didn't jinx it!) and I've been resting a lot more to try to let the wound heal up. My friends at work threw me a big party on Thursday, there must have been at least 75 people there, and it felt good to be able to say my goodbyes like that. I am a very lucky person to have worked with so many really good people with such big hearts. Haven't left the house much since then.... matter of fact, I think today might have been my first day out. I have to be careful because it's very easy to overdo things and get this pain in my shoulder/chest started up again.

The stitch is back

I probably mentioned at some time that I had a "stitch" in my side off and on for a few months before my cancer diagnosis, that turned out to be the liver tumors. Well, over the last 3 days, it's back. Ruth palpated it yesterday, and yes, my liver is enlarged again. So that's depressing, on top of all the other depressing stuff over the past week. I want to feel like we're moving in the right direction, we started gemzar/carboplatin yesterday directly into the vein in my inner elbow and that went fine. They were worried because gemzar burns some people going in. I didn't experience that. Sick this morning from it, though. I didn't want any heavy duty nausea premeds because I have been having trouble with the pain meds causing constipation and the nausea meds do the same thing - shut down peristalsis. May change my mind for next time if I am doing better in that regard. We also upped the fentanyl patch to 150 mc and will watch for 48 hours; if that doesn't do it, I have a script for 2x100 that I can fill, plus fentanyl lollipops for breakthrough pain. (Ruth told Albert to give me a lollypop if I'm crying, I felt like a four year old!) I have tried to wean myself of the percocet which doesn't control the pain as much as just knock me out and keep me from "regularity".
Also saw Dr. Vine who likes how the canyon in my chest is closing up. I still have to debride it 2-3x a day with the peroxide, and I'll see him in another 2 weeks. We will probably look to install a new port around that time.
Down about 45 pounds so far, luckily I had lots of extra.

not up to posting

will check in later in the week.

Results

We went to see Ruth today and the news was mixed. There has been tumor growth since the scans at the end of May, although they still are smaller than from the first scans. On the other hand, no progression to other organs. The liver enzyme numbers came up a little too (wrong direction). We can't know whether the chemo break for a month was responsible or whether the abraxane had maxed out its effectivenes... in either case, it's time for a switch. So next week I move to a combination of gemzar and carboplatin, which we will do every other week. The side effects are expected to be pretty similar to what I have been experiencing, with the addition of significant fatigue. Glad that I won't have to try and balance work with all of this. We'll add the zometa back in next week too, and the avastin once the hole in my chest closes and/or I get a new port in and healed.
We also worked on changing my pain meds for the inflammation to the nerves in my chest. We've upped the fentanyl, and switched to the brand name (bye by $600) version, and added neurontin which may help with quieting down the nerves. I was literally sweating like a faucet yesterday from all the meds; it was making people uncomfortable looking at me, I think. Have only slept through the night once in the last 10 days or so, and I have hopes for this new patch, which I'll get tomorrow.
I'm in a support group for metastatic breast cancer patients at NYU (only about 6 members), but I missed a couple of sessions and I found out on Wednesday that one of us died in the interim. She was really young, under 40, and it threw me; I knew she was very sick but she was pushing herself to get to the group... I guess I just don't know where the line is between very sick and dying. We had a really meaningful discussion about figuring out what we might want at the end -- hospice? fight til the last drop? but we all know that the decisions that get made in the end are different from what you think when you are "relatively" healthy. In a way, having the group meet before I met with Ruth was a little helpful, I had already started to contemplate what if I wasn't getting better yet.
Albert was on NYU's Sirius Radio Oncology show on Wednesday with others from his support group. Not sure if this will recur, but will post the details if it becomes something he does regularly.

Another late night posting

Things are going a little better, the pain is more under control with the patch, but I do wake with it in the middle of the night. I'm waiting for my 2AM percocet to kick in now....
Uneventful weekend. Went to shul on Friday nite, then Albert & I stayed close to home (ok, I barely left the house) Saturday & Sunday. Alix was at a sleep over last night and is looking forward to last minute school clothes shopping tomorrow. We have a week full of doctors this week -- we both see our oncs and gets scans, and I will also see the surgeon to get his thoughts on how I am healing. I think the wound is getting better (what do I know, though) but the nerve pain is still bad enough to keep me from sleeping through the night. I cannot wait for the day when I can sleep on my side again!! Either side!

Upshot of visit to oncologist

We agreed to skip this week's chemo. The expectation is that wound healing will be much further along if we wait. The avastin will wait even longer -- Ruth wants an actual skin cover before we do avastin. If we do it next week, I will have gone 5 weeks between treatments, so some assessment of where we are is in order. We took blood to see where the LDH liver enzyme numbers are (they started in April at over 20x upper normal, last time they were more like twice upper normal) and I will have a CT scan of my abdomen & pelvis on Wednesday. If there's been (god forbid) some progression, we have the next line of chemo backed up -- Gemzar & Carboplatin-- but the cancer would have had to have gotten pretty aggressive in the past couple of weeks to progress past where I was in May.
As for a new port, that may wait quite a while, so I don't have the same issue, and the placement will be a collaborative effort with the surgeon & the onc team.
Still treating the chest/shoulder pain with the fentanyl patch supplemented by percocet 2-3x day. Had 2 nights with almost no sleep, but we figured out that was the decadron (steroid) and that's down to once a day in the morning now, so last night was much better.
Today's my last day in the office, so much "wrap up" going on.

Back at work today, counting down

Did pretty well today! had some breakthrough pain in the AM that responded to percocet, stayed til 4, which was longer than expected. We will meet with Ruth, Beth & Eileen tomorrow to figure out how/when to proceed with my next chemo. I know there are concerns about the chemo impeding the healing from last week's surgery, but I am more concerned about fighting the cancer than whether and for how long I have a quarter-size hole in my chest. Eyes on the prize, right?
It was good to see folks, and I definitely felt some advance nostalgia for what it's going to be like not to see all the people who've been such a big part of my life for the past dozen years every day. Stay in touch, everyone.
In the TMI department, big shout out to my sister-in-law, Dena, for sending smooth move tea. My hero!

Doing better

The fentanyl patch migrated down my back overnight (!) and started curling up so we put on a new one this morning and taped it down. I can sit up for prolonged periods of an hour at a time, so it's looking much better, and I can move my arm a little more freely. Wee see the surgeon for follow up visit later today.
I will try to be in the office for the next couple of days, for as long as I can take it, just to finish stuff up. Not sure about my ability to concentrate, but we will see what we will see! Lisa & Karen are back in their native surroundings (well, Karen should get there tonight some time). I have lots of people who sent warm messages (from high school and college friends to close and closer relatives) that I need to respond to in the next couple of days. Glad to get them!

Saw my onc today

She put me on a fentanyl patch, a steroid (decadron), an antibiotic, sent me for a ct scan which showed nothing bad. Am almost on top of this pain thing, should be better in the overnight hours. Will post again when typing is comfortable.

Birthday

Today's my birthday, and it is much better than the last couple. First, the surgery went fine, was delayed by about an hour because I got sick while waiting on the gurney, from dehydration etc. The surgery itself was very short, maybe a half hour, and then a couple of hours in the recovery room, then back home. My shoulder pain did not abate, so I took percocet, which made me a nauseated, and I couldn't keep anything down. This morning, I started by taking 2 Aleve first, which I think was a help. I took the percocet a little later, but I think the Aleve is relieving the inflammation in my collarbone/shoulder area, so I could move my arm reasonably well today. Tomorrow will be an all-Aleve day, with Percocet in my pocket.
Lisa, Karen & Alix spent all day yesterday shopping for 50 things for my birthday. What a hoot -- everything from lip balm to pajamas to candy to a watch! It was fun opening it all up. And I got a lovely Hermes twilly from my sisterinlaw and brotherinlaw, and cards from a bunch of people. It's being a really good day.

Pain

Too much pain to sleep last night, too much pain to work today, too much pain to get chemo today. Pain pills making me sick. Tomorrow the port comes out.

The upshot

After a brutally long afternoon, a) there's no blood clot in my subclavian or jugular (whew), b) the catheter is exposed to "the world", and c) it has to come out. I saw a radiologist for a sonogram of the veins (OUCH, really.) and then went to my onc for a blood draw to send Dr. Vine (a Vanderbilt grad who, by the way, reminded me of every lawyer I ever knew from Vanderbilt -- is there something in the water that makes them better than everyone else?). I will call him tomorrow to schedule the removal (this week) , and then at some point I'll have a new one put in. Chemo as scheduled Thurs unless the surgery is Thursday!
I'm half glad it's coming out because I've been so uncomfortable the past week (Ruth said it may be resting on a nerve), and I'm so tired of the onc nurses telling me it looks "angry". Very glad no blood clot.
Just heard: surgery Friday.

Seeing new doc today

I will be seeing Sharon Zisman's "back-up" guy today, Anthony Vine. The whole area around the port is painful to the touch, and when I move my neck or shoulder on the left. Will post later on the outcome.

worried about the port

I took a percocet but I'm going to call the doctor first thing in the a.m. This can't be right, and I'm worried about the pain in the shoulder being a problem with the muscle or a blood clot.

Sunday

I was going to try to day trip to the beach with Alix today but I am just not up to shlepping. I have been having some discomfort in the area of the port which is preventing me from sleeping as soundly as I could... so we will just go up to Central Park this afternoon and vegg out. Update on other side effects: my nails are looking pretty awful and my guess is that it's only a week or two until they start to fall off. I can't easily open packaging without an implement and if I bump a nail while trying to do something else, it's like I hit it with a hammer, hard. This accounts for 9 out of 10 uses of the F word in my vocabulary these days. My toenails are, so far, unaffected. I started taking B6 for neuropathy, and will discuss taking acetyl l-carnitine on Thursday with Ruth & Beth. There's some data on using it with diabetic neuropathy as well as chemo induced neuropathy so I am willing to try it.
Lisa and Karen coming soon, so lots of good family hugs to look forward to! I think we have an action-packed weekend next week so it's good that I have Friday and Monday off from work.

May his memory be a blessing

One of the risks of watching other people's cancer blogs is that they sometimes die. Leroy Sievers, who has been blogging on NPR (I have a link to the right), died last night after a 2.5 year fight with metastatic lung cancer. Like many others, he and his wife called in hospice only a few days ago. He had a lot of fight in him.

Home again

We got back from the beach last Friday & we had a great time. Except for one morning, the weather was gorgeous, not too hot (low 80s) and sunny, with the occasional puffy cloud. I tried not to get too much sun but I did come home tanned :) and of course rested. Alix had a friend with her which helped allow me to vegg out a bit. Back to the real world now -- and of course my usual hours of insomnia which wind up as blog time.
How I'm feeling: pretty good overall. Some continuing pain where the port is, still have pain in fingers & toes, but bone pain has been nonexistent for about 10 days, even with the neupogen shots. So, no complaints here! And this is an extended chemo break for me, no tx until the 21st. Lisa and Karen are coming in that weekend, since apparently I'm turning 50. Oh, and by the way? 9 more days of work --tomorrow, then 2 more 4 day weeks.
I posted a week or so back on the whole question of staging of breast cancer. Well, I get these google alerts on metastatic breast cancer, and lo and behold, I find this thing in my inbox, so apparently the scientists also think BC staging needed a new approach. Glad they're doing it, sorry it wasn't available in 2006. Although, what that would have changed, I don't know. Would maybe/probably have done taxol back then, but if the cells were circulating & hadn't formed a tumor, I am not sure the taxol would have done much. I don't think they have anything that kills cancer cells before they find a home & start reproducing.
Other stuff I've been reading about that sounds promising includes a telomerase inhibitor based treatment that would tell the cancer cells it's time to stop reproducing. Telomeres, as I understand it, tell cells they've reproduced the maximum number of times. Telomerase is an enzyme made by tumors which lets them keep on going, and going..... Remember Dolly the cloned sheep -- her cells were "older" because there were less opportunities for them to reproduce before the telomeres would shut down cell reproduction. Inducing cell death, or cell suicide, is the holy grail of cancer treatment, I think.
Another thing I saw recently was that zometa, which I am on, in combination with adriamycin, which I took 2 yrs ago, is looking very promising as a front line therapy, which of course rules me out. Unfortunately, adriamycin can be pretty toxic to the heart so there's a maximum amount they will give you.

Can't complain about this weekend!

I've had a pretty easy weekend, which I wasn't expecting. Did ok at the 50th birthday party for my HS graduating class, out in Massapequa. I took the LIRR both ways, and the place was just a couple of blocks away from the station, and there were a bunch of people I was so glad to see, and some others that I was glad to meet and talk to, so all in all a good evening. I was home around 12, hard to remember the last time I was out that late, certainly it was before I started chemo in April. The night turned my whole mood around, and I'm feeling even better about starting this new phase of disabilitirement.
This morning I went on that realage site, the one where you put in all this info about your health and lifestyle and it tells you how old you "really" are... when I first did it a bunch of years ago it said I was a few years younger than my chron age. Today? 67.7. Not too surprising.
Alix and I shopped a little more for last minute things we need for the Fire Island trip, and then we're off tomorrow! Will post again on Friday when we get home, since we're doing our best to be off the grid all week.

Chemo day

It went pretty well. The last half hour I had some nausea; was sick when I got home but I'm doing better now. The key is to stay hydrated tonight without bringing on more nausea. Small sips. My nurse friends are still concerned about the divot and the port incision not healing after 3 months. I will need to keep them covered at the beach, and when I come back for my next chemo (not til 8/21 HOORAY) we will decide whether to a) keep an eye on them, b) move the port (arghhh, more surgery, need to go off avastin, then what if it doesn't heal, I have extra opportunities for infection; hate this idea) or c) ask Dr Zisman if she can stitch up the divot. By the way, for non-golfers, a divot is a hole your club makes. Needs repair. Like me.
Scans we think will be done in September, easier for me CAUSE I WON'T BE WORKING. Sorry about that, my fingers were dancing on the keyboard. Speaking of fingers, the onc who was subbing for Ruth said the nails were not a big deal but asked a lot about the finger/toe neuropathy since that is what might militate for a chemo switch. The inflection point seems to be whether I can button my shirt, put my earrings in, etc. The tingling does not prevent any of this as of now. Right now the only things I can't do are related to my nails, so I filed them way down again and will probably have a lot less discomfort.
On vacation now through 8/11. Will post from time to time except for the 8/4-8/8 period when we're at the beach.

Blech

Bone pain, joint pain, fingers, toes, bloody nose, nausea. Blech. Just sayin'.
On the other hand, only 14 more days in the office.

Cancerversary

This week is my cancerversary. It's been two years since my first diagnosis. At that point, they said stage 2a, because the tumor was not small (mini tootsie pop size) but had not spread to lymph nodes. I think the staging thing is a boatload of crap, not because they aren't doing their best to determine what the patient is facing, but because they don't have the right tools to figure this stuff out. For me to have the extent of the cancer I have now, it was in my bloodstream at that point. If they had the right kind of tests for cancer in the bloodstream -- instead of relying on tumor markers, which my cancer does not throw off-- then they would have staged me at stage 4 back then. People rely on their early staging -- cling to it, really -- but since 20 to 30 % of people with early stage cancer show up with mets within a couple of years, they are clinging to utter bullshit. Like I was. I'm a little angry about this, sorry. The cancerversary doesn't help.
Neither, of course, does the fact that I'm at my worst, side effect wise, today. Pain in hips, legs, & feet, nosebleeds, etc. Not to mention moody. I don't have much on my agenda today, will try to get out with Alix for a little while. 16 more days of work left (4 days a week, with one week off for good behavior) between now and 8/29.

We now rejoin the blog in process....

Well it has been a while since I've posted. I had a very long talk with Albert and Ruth last Thursday about what lies ahead of us. Ruth had previously said "we'll do scans in 3 months and we'll see", but I wanted to pin her down on what "we'll see" really means. Turns out it's probably a year to 18 months more chemo, maybe more, maybe we'll have to switch chemos, who knows. She was extremely unhappy with my stress level and the hours I'm putting in; she would much rather I worked in a job with no stress and part time hours. My immune system needs more time to bounce back after each chemo cycle than I am getting, and we need to make sure that I am strong and ready for what's coming. So, after reading me the riot act, we negotiated a 4 day workweek for the rest of the summer and going out on disability by the end of August. Had the conversation with my boss on Monday, will skip all details except to say that no one who knows us would be surprised at how it went.
So, not working, what will that be like? My main worry is that I will lie around and read or watch tv all day (insert image of Amy eating bonbons here), so I want to make sure that every day there is some place I have to be, if only for a few hours. Some volunteer work, classes, mah jongg, museums, whatever. I am fairly sure that a long retirement after age 65 is not particularly likely, so I decided to look at this period as a sort of retirement, although if/when they get the disease under control and if/when I am not on chemo for some period of time, maybe I can go back to work....

Good weekend but now it's Monday

We had a lovely weekend. My sister-in-law, Dena, was in town for her niece Alix's birthday. No, not my Alix, a grownup Alix who lives a half mile south of us. How odd is that for her to have two nieces named Alix? Anyhow, dinner at Novita, then a quiet day Saturday picking up all the things Alix had asked for.

Sunday was fabulous. Charlie got a zip car, a Honda CRV, and drove us up there without incident. GREAT day, beautiful weather, great to see Alix. She had arranged for a golf cart for me in case I couldn't get up the steep hill to see her bunk, which was really thoughtful, but I did fine. Slow, but steady. All in all, a great day. I have been feeling pretty strong the last few days, and I am gearing up for the next round of "juice", which will be on Thursday this week.

Doing pretty well these days

After a pretty stressful workweek -- which started out with an 11 hour day on Monday and was filled with nonstop work -- I'm having a nice weekend. My appetite has been pretty good the last day or two despite the fact that I still can only consistently taste fruit juices, pepper and bitter tastes. Everything else is mostly texture and smell. We went out to dinner last night to Novita, near Gramercy Park, with my favorite sister in law and her niece and Charlie, and I ate more than I have in weeks. Today is all about getting Alix what she asked us to bring to visiting day tomorrow. I can't wait to go, mostly to see her, but also because Surprise Lake is one of the handful of places that I feel consistently happy and peaceful. We are driving up (thanks, Charlie), which will be more comfortable for me than the train, that's for sure.

I reset my chemos to Thursdays (which means almost a whole 'nother week off!), so next weekend should be a little rougher than this one, but I'll be in Florida with mom & Buck & Lisa. If I need to lie around and do nothing, it will be ok with them. Me too.

Monday

The three day weekend went pretty well. Both of us took it pretty easy, I slept a bunch, which seems to help. Didn't need much in the way of pain meds, really only Friday and Saturday nights. My nails are acting up, pulling away from the nailbed a little on a couple of fingers, discoloring the nailbed. I cut them way short so as not to catch them on things. The worst is reaching in a handbag for keys or a phone or whatever, it makes me wince. I've also started with a little neuropathy in the toes/feet, where it feels like I'm walking on cellphane (kind of numb), and my toes often feel like someone just stopped squeezing them. Not complaining, just reporting.
Have some busy-ness coming up -- visiting day at camp next weekend, trip to Florida with Lisa to see mom the weekend after, then Alix comes home, then a 50th birthday party for my high school class on Aug 1, then our vacation.... maybe I need to go back to sleep and rest up. Wish I could. Part of me would love to just go out on disability and rest and rest and rest... but it's too soon for that. I want to defer it as long as possible since work also keeps me going -- to some extent. It is harder than I can tell you, keeping everything going all the time.

Chemo went ok today

Update on the medical front:

The little hole two inches above the port which I affectionately call the divot is actually open -- you can see the catheter. This may be because the steristrip fell off too early after the port was placed, but it is pretty spooky looking. The port itself still looks angry, so they are always pushing at it to make sure it's not infected. So it hurt a bunch, despite the cream they had me put on. Since it's right under the bra strap, my guess is that it's getting constantly irritated, so when I got home, I put a butterfly over the hole, and put a larger bandage over the whole damn thing. No chemo for 2 weeks, so I will keep it clean but with a bandage on, and we'll see what it looks like then.
Liver enzymes -- 3 of the 4 that we are tracking are within spitting distance of normal range. The one that was the worst, starting out at almost 4000, is now down to 400-550 , with the normal range at 100-200.
The infusion itself went ok, got dizzy once or twice but was able to walk home, always the best sign. Looking forward to a 3 day weekend.

Good day, sunshine...

Click here unless your network blocks youtube. We rested all weekend, and today was a good day! I had good news from Karen, she's coming home from Australia for my birthday in August, as will Lisa, and I bet it will be great. Charlie's coming over for dinner, Albert is feeling better, I think we know where we're going for our vacation, and all in all, a good good day.

Better

Got through Friday just fine, woke up this morning feeling rested and well. Legs feeling some pain but very tolerable, don't think I'll even need tylenol today. All in all, nothing to complain about. We're going to the green market today, which I always really enjoy, even though it's too early for the beautiful Jersey tomatoes I look forward to.



Down 25 lbs and people keep telling me how good I look. I know lots of women with cancer hate that -- they think, what, I looked worse with my own hair? and stuff like that -- but with me, it's because I was carrying around a lot of extra weight that looked awful. Part of my gaining the extra weight was because it was painful to walk more than a couple of blocks when I had the "stitch" that turned out to be the cancer in my liver. Anyhow, I don't mind it the way others do.

I got my new hat the other day, wore it yesterday for the first time. To me, it's funny & empowering, but you get lots of different looks from people...

More of the same

Had the same kind of day yesterday: nausea, vomiting. I had an appointment with Dr. Zisman because the nurses at Ruth's office don't like the look of the port -- it looks "angry" to them. It does look kind of bluish/reddish and is pretty sensitive to the touch, but I think the latter is because it's so close to the surface. Anyhow, Dr. Zisman thinks it's ok, is putting me on an antibiotic "just in case", and says we can move it if Ruth/Beth think we should. No f-in way. I'm not having an additional surgery unless it's taking cancer out or putting something cancer-killing in. If the port weren't working as well as it is -- blood comes out, chemo goes in -- then maybe. Otherwise, nope.

Felt horrible about missing work these two days; there are people I let down and although they are understanding, it's not how I like to treat them. I am going to switch the routine back to Wednesdays, and try to get the Zometa infusion on Thursdays, so that the worst of it is on the weekends.

Alix goes to camp today.

Yecch

Had chemo on Monday, and they included the Zometa again. I did pretty well Tuesday, started to feel fatigued & had some bone pain but managed through it with Tylenol. Last night the pain got worse, so I took a percocet & an ativan to help me sleep, and this morning was terrible. I vomited a couple of times early on, but thought I could telecommute. WRONG! had to drop off a conference call because of the vomiting -- even though it was on mute! slept most of the rest of today but I still feel weak and nauseated. Tried some tea earlier, hope to keep that down.

Yecch.

Two months since diagnosis

And this was the best week yet. Only took 1 percocet all week, had very little nausea, got tired easily but so what. Lisa was in this weekend and we got to spend some very good quality time together, mostly eating, but lots of talk. Tomorrow's infusion has the Zometa, which gave me flu like symptoms last time -- fever, chills, aches, etc. I'm going to take ibuprofen before I go in the morning.

Hard to believe it's only been two months. I have to make sure that I live each month and not just get through it, because I can't take them for granted. I've started a bucket list for trips I want to take, first up is Florida to see Mom & Buck. Next year, when Alix has some time off from school, I want to take her to California to see all the relatives out there. We will probably need a week to do that, and will need to get from LA to SF to see everyone. After that... well there are more places to go: Israel, France, Italy... one day at a time, right?

Doing OK

Don't want to jinx it, but I had chemo on Monday and today's Wednesday and I'm doing pretty well! No leg pain yet, appetite still ok, taste buds still on the fritz (can only taste pepper and bitter, everything else is just texture), energy level not too bad. I actually put in kind of a long day yesterday, left home at 7:30 and came home at 7, but I'm not too much the worse for wear.
Gotta get Alix ready for camp, she leaves a week from Friday...

R&R

This weekend I got my appetite back, and last night I slept soundly for 11 hours. I feel so much better! Chemo again tomorrow morning, and I decided not to go to our New Jersey offsite meeting this week. First, my team has too much on its plate coming up in the next couple of weeks, and second, being "up" and around people for days that long (8 to 8 or longer) is beyond me right now. It was a big relief when the subject came up & my boss was fine with my staying back to work on other stuff.

The two major sources of work/concern are Alix's sleepaway camp in 12 days and her bat mitzvah planning. I think I am finally done with the major stuff for camp... only real question mark is bathing suits, of which I think we only have 4. I know we bought one for her in NC but I have not a clue where it is. And we decided on the bat mitzvah venue, which was a major worry laid to rest. Next up is picking out invitations. I have had an offer of help with legwork from the other bar/bat mitzvah moms, which is greatly appreciated and gladly accepted.

The little things...

Must've caught a bug the other day -- I had some birthday ice cream cake Wednesday afternoon, got home from work about 7 and was dizzy and nauseated. Took a compazine and got into bed for a couple of hours, skipped dinner, and in the middle of the night, [insert various uncomfortable and umpleasant symptoms here]. Still felt very weak yesterday, couldn't even sit up for long periods of time, and I was only able to eat a couple of boiled eggs, some broth & crackers all day. On the other hand, I woke up this morning feeling like I can go to work. It looks like the little things that I used to be able to ride out have a bigger effect on my system now. I'm down about 23 lbs since diagnosis, another 5 more until Beth is happy with me.

I guess have to be more careful about what I eat but I didn't think Baskin Robbins would let me down!

Now that they're superstars, they'll forget the little people

I was very happy to see that both Albert's oncologist, Abe Chachoua, and my oncologist, Ruth Oratz, made it to this year's NY Magazine top doctors list. My radiation oncologist from last time around, Silvia Formenti, made it too - but she chairs rad onc at NYU, so you would hope she was on it! Of course, Albert now can't get through to Abe to get his PET/CT results from last week. Please keep all fingers/toes crossed for no new tumors. Update - Scan was clear! No new tumors for Albert!

I have been pretty successful treating the acne from last week with some prescription benzoyl peroxide and clindagel left over from Albert's reaction to steroids. So I don't feel quite as hideous as I did Friday and Saturday. Since this is my week off from chemo, I expect to feel pretty ok this week, less queasiness and weakness. The extreme heat is supposed to break tonight, so in general, tomorrow looks a lot brighter!

In a word

Acne.

Oh, and by the way, the picture? not me. From the wig catalog.

Checking in

Doing pretty well today. Friday and Saturday tend to be the hardest days, because of the leg pain and nausea. I did not need a compazine this morning (yay) but I can tell I will need the percocet later today. More importantly, I unveiled the new wig today. It's a little sassier than the dark brown ones I've been wearing the last couple of weeks. I got it in a light brown with ginger highlights, which are blonde in some lights and reddish in others. It's got more hair than the other ones, too, so it feels very full.

Got through yesterday's chemo (Abraxane & Avastin) just fine, no side effects like last week's from the Zometa. My hematocrit and hemoglobin numbers are starting to slip, so we're adding Repleva every other day, starting tonight. I also got a printout of the liver enzyme test results for Lactate Dehydrogenase (LD), Alkaline Phosphatase (ALP), Aspartate Aminotransferase (AST), and Alanine Aminotransferase (ALT). I graphed the results over the past 6 weeks or so. The dramatic change is in the LD, which for me acts like tumor markers do for other people who actually have tumor markers, which I don't. If that makes any sense.

Ruth also checked manually and says the liver is much softer, less bumpy, smaller than it was, and she said she's very happy with the progress so far. I will not have another set of scans for 3 months, except for an xray in a couple of days to rule in/out a met to the femur that may or may not have been on the ct scans. The radiologist said on the last report that the right femur met was stable, but there was no mention on the prior report. I wouldn't be tremendously surprised, since I have been aware of pain in the right hip socket. I have next week off from chemo, so I don't have treatment until the 17th. Woo HOO! plus, we're arranging to have an extra week chemo vacation in August so I can actually get away to rest. Need that big time, let me tell you.

Good news!

Feeling better today, although I couldn't keep liquids down this morning. We saw Dr. Lymberis to go over the results of Tuesday's scans, and here's what the report says:
"Again noted are innumerable hepatic metastases. The lesion previously measured in the dome of the liver measures 3.5 x 2.7cm and was 4 x 3.1cm. The lesion in the lateral segment measures 2.4 x 1.9cm and was 2.4 x 2.2cm. The large confluent mass in the periphery of the right lobe of the liver now measures 9.9 x 6.7 cm and was 13 x 7.6cm. Innumberable other hepatic metastases are seen. The necrotic portacaval lymph node now measures 2.6 x 1.1cm and was 3.6 x 2.4cm. The lytic lesions appear stable."

This means that the cocktail is working. All of the tumors they are using as markers shrank by about a third in only 4 treatments.

Update

I got my first Zometa infusion Tuesday and was FREEZING at work on Wednesday, couldn't use the keyboard my hands were so cold, even with a heavy sweater and a fleece jacket on. Came home lunchtime and had a low grade fever of 100.5 or so (at one point, the thermometer read 121.5 which really cracked us up). 101.6 at 1 am but it is responding to tylenol. Alix had a fever on and off, too, but I don't think it's related! According to my buddy on the BC board, this "is the normal reaction to the first infusion ONLY! It does not normally happen more than the one time. I know the first few months I got it I was a little more run down the week I got my zometa, but I guess I am so run down by other things now I don't notice if the zometa is running me down. Don't worry, this is normal, mine lasted about 5 days and that was unusual most people I hear of run a fever and feel like the flu for just a day or two."

whew! Will stay home Thursday.

Another day, another infusion...

Had a pretty quiet holiday weekend, and took today off to have the CT scan (abdomen, pelvis, lower spine) and chemo. As usual, tried to make jokes with the folks at radiology, as if having them like me will change the outcome any, which of course is totally ridiculous. Made each of them say "think shrink" before the scan. Had to drink a bottle of that barium crap, on an empty stomach, which got me a little nauseated before the chemo. When I got to Ruth's office, all I wanted was my ipod and a blankie. Got a chance to close my eyes a little and the nausea got better as I sat there. They pushed extra fluids, so between the iodine contrast for the CT, the extra saline, the abraxane and the zometa, I have a lot of strange gook in my veins tonite.
Only new symptom is some discoloration under my nails, looks a little like I have tiny splinters just below the "quick" of the nail. Beth recommended tea tree oil, which I have in the house but it stinks to high heaven and renders the room I used it in uninhabitable for the rest of the family. Will have to figure out where to apply it. Maybe I'll bring it to work and use a ladies room on a different floor, then mysteriously disappear......
I see Dr. Lymberis on Friday, should have CT results then. Think "shrink". Think "shrink".

Got "juiced"

"Juiced" is what my boss called it, and I like it because it's just irreverent enough. Before the chemo, Ruth palpated the liver and she is sure that it felt better than before we started treatment. The liver enzymes continue to get better, and at some point, I'll start asking her for the numbers and posting them here. I do know that before treatment, the LDH number was 2600 or so and came down to 1700 after the very first chemo; normal is somewhere around 125. My white cells were a little high, so there was some question about whether I should keep taking the neupogen, but Beth doesn't want me to miss any treatments, so I will still do twice a week, and may do less during my "week off". I also got the pathology report on the liver biopsy, which was done with a fine needle and therefore didn't pick up a lot of cells. Turns out that the sample was Pr+, but because the sample is so small, there's no score, so we don't know the extent of the hormone receptivity. It won't change my current chemo regime, but Ruth said that if at some point in the future we decide to do a chemo holiday, we could use hormone therapy as a filler, so to speak. As you already know, I'm thinking AND not OR, but there's no real reason to add it now.
Chemo went smoothly, met a very nice 4th yr associate from a big law firm, who is only 30 and so had had some of her eggs harvested the day before. She was trying to figure out whether and how to work, given the billable hour pressure that would be on her even if she worked part time. Got the avastin first, then abraxane, and that will be my regimen for the 1st and 3rd treatment each month. The second treatment will be avastin and zometa.
Crawled right into bed when I got home -- it was cold and rainy out and I got thoroughly chilled waiting for a cab. Charlie was over for dinner, and we had a good discussion about what tutoring Alix will need for the specialized high schools test next year. I think we are going to go with the Kaplan personal tutor, which allows her to do the classes too. Poor kid, the test is a week or so before her bat mitzvah, so she'll have a lot of study/practice to do next fall.

On track again

This last week found me in kind of a blue mood. One contributing factor was that all of the info I accumulated in the last month got digested, and I got angry for the first time, which of course manifests as depression. Another factor was, and I know this sounds silly, that I didn't DO anything about my cancer last week. I think as long as I am getting the chemo, and actively fighting, it's easier to stay strong(er) and (relatively) positive, but in the week off, it's harder to maintain. Have gone 10 days now since my last pain meds, so despite the naysaying from the onc's office, I'm sure the leg pain is chemo related and is not related to the hip/spine mets.
Interesting discussion on the bcmets board about the word "survivor" and the extent to which it applies to those of us who are in a long-term, perpetual struggle/fight. Many of the women feel that the word survivor should apply to the primary cancer only folks, and that another word should apply to us. Not sure if I know where I come down on that issue, but something that was raised resonated with me -- we need a pink camouflage ribbon just for us. So that it's clear we are fighting, not "raising awareness". I may try to create a gif file this week.
Albert & I celebrated our 10th anniversary this weekend, while Alix had a whirlwind of social stuff. Chemo tomorrow, onward and upward.

You can't make this stuff up....

Thursday, in our household, is known as Alina Day. Alina is our wonderful cleaning woman, who comes weekly. Our Thursday song goes (to the tune of Tararaboomdeeay) "I love Alina Day, I love Alina Day"(ad infinitum, because we lack imagination). Today, when Alina opened our front door, a black kitten raced in after her, and promptly took up residence under our claw-footed tub in an entirely unreachable place. She (?) stayed there for a couple of hours, until our neighbor Stuart Hodes (hereinafter the Cat Whisperer, but probably better known for his work on Broadway) coaxed the little thing out from her hiding space, and into a cat carrier they happened to have. He put signs up downstairs, and hopefully she belongs to someone in the building, but how the little thing chose our fifth floor apartment, we'll never know. Our three birds feel much safer now.
I got a wonderful card from my former assistant, Shinta. It was very moving, and it reads a little like she wrote it but it's a printed card. The middle part said "I am really proud to know you and to stand by your side during this difficult time. You are one of the strongest people I know and though you may not feel this way on the inside, you are truly extraordinary to the people around you. I see so much courage in your eyes and hopefulness in your heart, and I have no doubt that you will pass through these gray clouds into the sunshine again." I'm probably luckier to know her than vice versa, but the card made me feel much better.
I did the Look Good, Feel Better thing today, and I looked pretty good. The feeling better part, not so much. Physically I am well, but it is a little bit of a seesaw emotionally. I am still trying to wrap my mind around this diagnosis, and sometimes it just smacks me in the face. It's only been 3 weeks and a couple days since the sky fell in, so I'm going to give myself a tiny bit more time to get used to it.

Today is my official day off from chemo, and I was feeling pretty terrific until about 3:30 this afternoon, when apparently peristalsis restarted - luckily I had just walked in the door -- will be fine after a nap, I think. Spirits very good. Am down about 15 lbs so far, from eating healthy and lightly. Fun to see the weight fall off, but I have many many many pounds to go before the weight charts (thanks a lot, MetLife!) are happy with me. I have been pretty happy with the way the wigs look on me, and everyone at work is very complimentary, but I know that once the eyebrows go and those little sideburn hairs go, I will start to "look" sick. So I signed up for the American Cancer Society's "look good, feel better" program late this week. They are good at teaching you how to camouflage the little things, which will help. Last time, I just got the video, and it didn't really help me enough. They give you a bunch of makeup donated by major cosmetics companies, since you're really not supposed to use your own makeup once your immune system is compromised as the stuff tends to harbor bacteria.
I had a thought on the way to work this morning that Albert & I can't be the only couple going through something like this together, and I'm just noodling around whether there's a book in it somewhere.... I could ask on the different online boards for other peoples' stories, hints, coping styles, etc.... of course, there are not so many millions of people who would want to buy the book. Thank God, really, when you think about it! Come to think about it, I guess I would wish that nobody would want it. In which case, maybe never mind.

Bald spots at sunrise....

Some poetic license, there; no sun at all today, very rainy, but the shower revealed some large bald spots, so wig today.

Having a good day

No pain meds all day!! very happy about that, and that I have had a bunch of energy. Looking forward to having a week off from chemo and feeling good is a pretty good thing. We did a lot this weekend (comparatively). Synagogue yesterday morning, got Alix's and my hair cut this morning, ordered Alix's new bed, food shopping... well it felt like a lot! I have been very good at following Beth's food advice, so I am about 14 lbs lighter than when this leg of the odyssey began on 4/21. We'll see how that progresses.
Great mother's day -- flowers, earrings & a gift card for a new scarf from Hermes!

Somehow, we know what we know...

I was at an offsite meeting in Stamford for a few days, and my attempt at posting via email apparently failed miserably, so some updates are due. First, Dr. Megibow confirmed that the lesions on the hip & spine are indeed metastases. I knew that already. I did have those brief moments of hope that we were dealing with "just" the liver, but inside I knew that it was not real. Because of that, when Beth was telling me this on the phone, we had a conversation about my first course of treatment in 2006. I told Beth that I wasn't blaming anyone or even criticising, but that looking backwards, when I was diagnosed with atypical medullary breast cancer, we all seized on the "medullary" part and not the "atypical" part. Medullarys are associated with good outcomes (ie 94% 5 year survival rate - although I don't know how fresh that data is), atypical medullarys have a prognosis more like invasive ductal (64%). Again, looking back, the cell division rate was high, and the tumor wasn't tiny. So probably, Taxol would have been a good idea. Would it have changed where we are now? No way to know. But, my point was that this time, optimism is not a strategy. Hope is not a strategy. Our strategy has to be realistic and we have to bring everything we have to bear on this disease.
So I had the last chemo of this cycle on Tuesday, and it went just great. Got to watch all but the last 10 minutes of Roman Holiday on her portable dvd player. My blood work showed that the liver enzymes are getting better, and that the neupogen is keeping my white blood cells in good shape.
Albert and I met with Dr. Stella Lymberis yesterday to talk about a protocol for radiation to the hip & spine. She showed us the lesions on the CT scan, which was helpful, and her recommendation is that we give the chemo & avastin a couple of weeks to do their thing, have another CT scan in 3 weeks, then see what's what. If the tumors are stable or have shrunk, then we will not radiate yet. If there is any progression of these 2 tumors, we will radiate, because in both cases they are close enough to nerves or the spinal column to worry about. We both liked Dr. Lymberis, her approach was both very rational and reassuring. I had the same conversation with her that I had with Beth, because it's important that the doctors know how I feel about treating my disease.
Hair is falling out but not yet in clumps, so no bald patches yet. At the offsite, I wore a beige wool jacket that just collected EVERY hair, and I was extremely self conscious all day Thursday. Today I am going to get my hair cut pretty short so it's not so noticable when I shed, and I expect by next weekend to have to buzz it and start with the wigs.

The Innumerables

Here are some of my favorite people in the online breast cancer world:

Buzz - diagnosed 2004 with innumerable liver & bone mets, was on Taxol & Avastin for 2 yrs without progression, had to go off Avastin due to kidney problems, still doing well, still posting
Ann - diagnosed 2004 with innumerable liver mets, NED from 9/04 to 3/07, on Abraxane & Herceptin now, fighting more mets but still posting
Carla - diagnosed 2001, stable for several years, still fighting, still posting.
Found one or two others who made it 6 or 7 yrs before losing the fight. There are any number of women with multiple liver mets who are on the three different breast cancer mailing lists/boards, and I get a lot of hope & courage from all of them.

I have chemo later today, should find out all the results to all the tests... will post after.

Update: Ruth is asking Dr Megibow, who run the faculty radiology practice, to take a second look at all the scans, in conjunction with some other doctors, to determine one way or the other whether I have mets in my spine & hip.

What we know & what we don't know

I called Ruth's office looking for results on the MRIs, and she had left a message for me: brain scan was clear, but she needs to talk to me Tuesday about "disc disease" -- which usually doesn't refer to cancer, I don't think. I am so confused -- what was on the CT scan if they weren't mets?
Almost like clockwork, the leg pain showed up last night, but I took a percocet and a senokot, enough said. I'll see how long the leg pain lasts; last week it was pretty much gone by Monday, and this week I did the chemo a day earlier, so it could be that I only have it for the weekend. Unfortunately, next week I am at a 3 day offsite meeting from Wednesday-Friday in Connecticut, and the chemo is Tuesday, so if the pattern holds, Thursday night and Friday won't be a picnic.
In other news, my 10-syringe package of Neupogen arrived on Friday morning, and Beth thinks that will last a month if we're doing it twice a week. I gave myself an injection last night, wasn't as hard as I thought it would be. What's one more puncture mark, right? I look like a pincushion already.
Alix has a bar mitzvah to go to today, luckily not one of the fancy ones, and not too far away from home. A couple of them have required long cab rides at 1 am, when cabs are hard to find. This one sounds like totally a kids' party, which I am sure she is up for.

Made it through the worst of it.

Getting my liver biopsied was both worse, and not as bad, as I thought it would be. We got there around 10:30, had a little chat with the resident, then they did an ultrasound to figure out where the best angle would be, which turned out to be from my stomach, not my side. They did the usual numbing etc, but the inside doesn't get numb, and they had to do this pumping kind of thing with the needle, that was the worst part. Big admission==> I cried a little. Was still (am still) in pain from the port placement yesterday, so the combination was just a little too much for me. Got to rest for an hour or two afterwards in a hospital room, then they took out the IV and let me go home. So, all in all I'm ok. Still need to hear a) what was found on the MRIs yesterday- I PRAY no brain mets and b) how the hell to give myself neupogen injections starting tomorrow. Wish I would hear from Ruth & Beth.

Once, twice, three times a patient...

Woke up at the crack of dawn today to get ready for the port installation / implantation /placement. Wasn't allowed to eat after midnight, so no coffee to assist the process, which sucked. Woke Alix up early for school, and Albert & I grabbed a cab up to Mount Sinai, up on 100th and Madison. HUGE hospital, much bigger than NYU, more bureaucracy but with nice touches here and there, like instead of just waiting for someone to take your info, you get one of those mall beepers. Got there at 7 as requested, surgery started at around 9:30. They used a vein on the front of my wrist, very very very painful. Also, the twilight sleep-- not the pain meds, just the sleepy meds -- wore off about 20 minutes before the surgery ended, so I heard them talking about how hard it was to get the implant in. Shoulder feels like someone socked me 10 times, hard. Looks that way too. Then I needed a xray after but the first one wasn't usable, so they did another. Gave me some graham crackers and juice. Discharged me 10 minutes before round 2 - Chemotherapy - was supposed to start.

So, into another cab, head down the FDR to Ruth's for chemo. Beth takes one look at the dressing and sees how much I was bruised, takes blood, gets the line in, then cleans up the whole port area again & rebandages it. Tapes a glove full of ice on it afterwards for the swelling, which was nice but about which more later. I talked with Beth about the "cold" bone scan, and that my research showed that some mets will not show on a bone scan, she says it's not very common but it does happen and that's Ruth's working theory too. So, I was right not to get too giddy. After she checks, she tells me my wbc (granulyte count) is slipping, so she's going to order neupogen, which I will self inject, for Friday and Sunday, and probably thereafter. We're all done by 1:45, the exact time we're scheduled for round 3 - Brain, thoracic & cervical spine MRIs.
Wouldn't it have been nice to know I still had 2 metal leads for the monitors sticking to my back before the MRI instead of finding them today? Probably.... wonder if that will screw up results in any way. So, anyway, over to NYU MRI in the basement, take 2 ativan, that help except that once I do fall asleep I wake up with a start. Apparently not a problem for them. They use my hand for the IV after the arm was no good (told them so....).
Could not have done any of this without Albert. He was there waiting at every step, getting me where I needed to be, optimistic, encouraging. We finally got home by 4. Percocet by 4:05. Asleep by 4:15. Woke a little for dinner, but slept again til now. Will try a little more sleep soon before tomorrow's round 4 -- liver biopsy.

Hard to believe....

I called Beth first thing on Monday morning to talk about the leg pain, and she said she'd look at the bone scan results & call me back. Got through the day ok, when sitting got painful I stood up & walked around, which really helps, only needed tylenol for much of the day. I had a 2pm appointment with Sharon Zisman, the surgeon who will implant my port. I really liked her, she has a very warm way about her, and was as interested in me as she was in my disease. We scheduled the surgery for 9am Wednesday, and while I was there, Albert scheduled my liver biopsy for Thursday, which makes those two days pretty busy. Wednesday after the port I have chemo at noon (they can use the port) and 2 MRIs at 1:45. Thursday, after the biopsy, I'll sleep.
When I finally spoke to Beth at 5:15, she said that the bone scan results did not confirm the CT scan -- the lytic lesions were not evident on the bone scan -- which probably means that the mets are not responsible for the pain I've been having. I got very excited by the prospect that maybe I don't have bone mets, but did some research last night, and apparently this is something that can happen (here are a couple of references: one, two, three). They look at /measure different things, and the bone scan is not necessarily conclusive. One of the MRIs is of the hip/spine, that should be determinative.
Had emails from Aunt Ilene and my cousin Ali, the one good thing coming out of this crappy disease is that I am being given another opportunity to re-establish relationships with family (all the other good things I can think of are too morbid to list, like no more worrying about how to make my savings last in retirement... that's kind of a MetLife joke, since I spent a year working on the retirement strategies project aimed at educating on that very topic) Went through all our pain meds last night to see how strong each was -- I don't want to overmedicate. Turns out vicodin is marginally less strong than percocet so that's what I took last night when the pain kept me awake. Worked ok but I was aware of sleeping very lightly.

The weekend

Friday I took the day off, as planned. I thought the bone scan, scheduled for noon, would take an hour and then I could have a few hours with Alix, but it turns out they give you an injection and then you have a three hour wait til they do the scan. Well, hanging out in the waiting room with a couple of friends was Fyvush Finkel! and they were all talking just loud enough and dropping enough names that you knew they wanted you to be listening.
When I went into the machine, I was trying to pray but could not really come up with anything, so I tried to come up with all the people and things I was thankful that God put on this earth, and got up to about 70 or so. Will try to do better next time. Meanwhile, in the last 15 minutes on the machine, I started developing leg pains that have just gotten worse and worse over the last couple of days. Naturally my first thought was widespread bone mets, since I know I have some, but some other possible culprits are the abraxane itself, or maybe the spinal met is compressing a nerve. Will check with Beth tomorrow. Meanwhile, have been taking the 600mg ibuprofen during the day and Percocet at night to sleep.
I went with Alix to see Romney Piamonte, who works with me, in Honor, a new musical. It was really great, and Alix was happy to meet him and Pat, another colleague who was in the audience. She is bringing her 2 programs (Honor & Gypsy) to her drama teacher tomorrow.
I heard from Aunt Di & Claudia this weekend, very happy about both. I'm so bad about keeping in touch with people that I've lost every expectation that anyone wants to talk to me anymore! Am trying to do better now, Alix in particular needs a lot of family.

Where we are so far and how we got here....

After two tests showed abnormal liver function, I had a CT scan on Friday, April 18th. When I got the message that Ruth Oratz called, I knew she had bad news, but I was still hoping that it was going to be liver related -- cirrhosis, hepatitis, something else bad -- but I kind of knew. So Albert and I converged on her office, where she was clearly upset. Here's what the report said:
Liver- innumerable hepatic metastases are visualized. Several are chosen for reference measuring 4x3cm, 2.2x2.4cm, 2.3x2.3cm and 2.5x1.6cm. Many other lsions, some larger. Spleen, pancreas, biliary tree, adrenals, kidneys, bowel, pelvic viscera, lymph nodes, peritoneum all normal. Skeletal - lytic lesion crossing the left S1 joint bu predominantly in the left iliac wing measuring 2.8x2.1cm. A lytic lesion is seen in the pedicle of T12 measuring approximately 1.6x1.1cm.
That word innumerable was what did it. I lost a little of my strong self, it's like I have a hairline fracture of the spirit. We started working on all the next steps -- liver biopsy, port implant, MRIs, bone scan, chemo. When I had cancer the first time, I had the feeling that I was on the treatment treadmill, that things just follow one from the other. Back on the treadmill now.

Told the key people at work, or at least some of them. I am learning how to do it without getting too emotional, because it is more important that I stay strong and appear positive than "keep it real". Almost no one can handle the real feelings, so I save it for those who can and won't run away. And for here.
Had my first chemo on Thursday. The actual infusion took less than an hour, had a longish session with Beth about diet. Apparently I cannot gain any more weight, and I need to make sure that my blood sugar stays reasonably level, so smaller meals but more frequent snacks. Foods with lower glycemic values will be better, put less strain on my digestive system.
I went back to work afterwards, and took Alix to see Gypsy. Trying to keep as much normal in my life as I can.