One hell of a year

It's been three weeks and two chemo treatments since I last posted. There's a lot to go over, and of course, almost none of it is good.  As you recall, we were watching how the gemcitabine (Gemzar) was affecting Marye after her liver explosion in mid-November.  The oncologist tells me that this chemo is so mild that most women don't need any anti-emetic at all while using it.  But we've had no such luck.  The treatment in late November and now the latest one (last Thursday) were both brutal.  She started vomiting almost immediately and it lasted through the weekend.  Still, I wasn't convinced that the chemo was causing it because she had some pretty serious nausea for the two weeks between treatments and it was unclear if her recent liver inflammation was to blame.  Well, after last week, it's clear that the chemo is at least mostly responsible.  The lab work shows her liver is back to functioning almost normally, but she gets really sick right after the treatment.  Along with the nausea, she has a complete lack of energy and sleeps over 20 hours per day.  On Sunday, she finally got up and took a shower.  But it didn't end well as she fainted soon after.  Fortunately, I was right there to catch her and bring her to the floor so she didn't fall.  For about a minute I couldn't get her to respond to me, so I called 911.  When the EMTs arrived, they checked her vital signs and Marye had begun to perk up a bit, so we didn't go to the hospital.  I was ready, though, to take her downtown if that happened again.

By Monday, she started to feel a little better and was able to move around some, although her stomach was still pretty upset.  I talked to the onc and let her know what was going on with the constant nausea and the passing out and stuff.  Dr. Riley was fairly concerned about the whole thing and decided to set Marye up for an MRI on her brain to see if the cancer had spread there.  Apparently, when there is uncontrolled nausea, that is a pretty good indicator of pressure on the brain caused by tumors.  In the meantime, Marye was still vomiting all week, which was different than the last treatment, when she would feel sick, but not actually vomit.  So I was pretty anxious about what the MRI would reveal.  We decided to stop the chemo for a few weeks to give Marye a break and reevaluate after the MRI.  Dr. Riley also wanted to give Marye some IV fluids and give her a bag of Zofran to help with the nausea.  That was scheduled for Thursday.

We went down on Wednesday for the MRI, and Marye was feeling really lousy through the whole thing.  On Thursday, I took her to the cancer clinic where they plugged her in and gave her the Zofran and IV solution.  Although we weren't scheduled to see the oncologist, she appeared in the clinic around 5:30 pm, and she didn't look happy.  Apparently, the MRI showed several punctates in Marye's brain that are concerning.  They are very small (< 2.5 mm) and might be metastases, or nothing at all.  If they are cancer, because the chemo drugs cannot penetrate the blood-brain barrier, the only way to fight it is with radiation.  It's important to note that Dr. Riley wasn't convinced that this is cancer, and even if it is, the lesions are too small to be causing the nausea.  Well, with Marye still feeling really bad, the doctor convinced me (and I, in turn, convinced Marye) that the best move was to just admit her into the hospital for a day or two to get a handle on the nausea.  This would also allow the onc to keep a close eye on her liver, since it took a bit of a downturn since last week, based on Thursday's labs.  Of course, this went over like a lead balloon with Marye.  Laying in a hospital bed is not how she wants to spend the weekend before Christmas, or any weekend, for that matter.  The same goes for me.

On Friday morning, Marye woke up and did actually feel a bit better.  She at least put on a good show and we decided that anything that the hospital could do, we could get done outpatient.  Of course, this isn't exactly true, since the clinic is now closed until after Christmas.  But we figured that as long as she's not sick, she can stay home and stay hydrated.  If she starts puking, I'll run her downtown to the ER.  If she can hold out until next week, they can take labs and give her IV fluids and Zofran in the clinic, outpatient style.  The only real good news from the past few weeks was that the tumor markers actually went down from last month.  So, despite the horrible side-effects of the gemcitabine, it looks like it's actually effective on the cancer.

Moving forward, we need to make a decision right after the new year on what drug we want to use.  If we stick with the gemcitabine, the side-effects are so horrible that her quality of life is complete crap.  On the other hand, if we go to a different drug, there's no guarantee that the side-effects will be better or it will be effective.  So, again, there's a balance to be struck between the efficacy and toxicity of the chemotherapy.  As for the spots on the brain, the radiation oncologist recommends doing another MRI in two months to see if they grow.  If they do, then we'll have to start with radiation, since no chemo can get to the brain.  It sucks that the cancer can get through the blood-brain barrier, but the chemo cannot.  It figures.  In any event, unless something major happens, I don't anticipate another update until the first week of January.  We are planning a quiet Christmas and New Year.  I hope you all, too, have a nice holiday season.

-Chris

Two in one

Hi folks!  Hope everyone is well.  I have two updates on Marye from the past week or so.  Thanksgiving week came in with a bang as Marye was suffering from pretty serious nausea and vomiting after her last chemo (the week before Turkey Day.)  She spent Saturday and Sunday in bed, not feeling well at all.  By Monday, she had had enough of laying around and wanted to go grocery shopping.  But as soon as I got her into the sunlight, I could see that she was completely jaundiced.  I mean, she was doing her best impersonation of a pumpkin pie.  That's the best way to describe her color.  I don't know if the jaundice just came up on Monday, or that I hadn't noticed it at home under the yellow lights in the house.  Anyway, we had company coming and Thanksgiving dinner to plan, so we went into the grocery store.  Thanks to my Star Trek-like communicator (smart phone), I was able to shoot off an email to her oncologist right away with this new development.  In the meantime, we filled a shopping cart full of food, although we hadn't gotten to the turkey, yet.  Twenty minutes later, Marye was sick enough that she just needed to go home.  I left the (full) cart in the aisle and took Marye home, planning on zipping right back to the store to pick up where I left off, and hoping that the milk I had in the cart hadn't spoiled too much.

By this time, though, Dr. Riley responded that if Marye was really jaundiced, she needed to get her blood drawn.  Right now.  Of course.  So, the kid at the Meijer was forced to restock all of my groceries as I had effectively abandoned them and took Marye downtown to the cancer clinic.  An hour later, we got the results of the blood work, and, as expected, her bilirubin was really elevated at 6.9 (normal is <1.0).  A few calls to Dr. Vitale's office, and we were ready to head to Norton Hospital for an emergency ERCP.  This was a good thing, since I wasn't sure that the doctor would even be available, with the approaching holiday and all.  In short, Marye's stent was blocked, thus the elevated bilirubin.  We were really lucky to get the ERCP done when we did, since that condition does not get better with time.  Had we waited another day (or six), she could have easily been down with another septic infection from the stent.  The ERCP went smoothly and I got her home that night around 11:30 pm.

It took a few days for the bilirubin and jaundice to clear, but she did start feeling somewhat better.  It actually took longer than I expected, but it did start to clear up by the weekend.  Our company came, and we had a nice holiday.  Marye was a trouper, too.  She did many of the side dishes for Thanksgiving.  Good thing, too, since I haven't figured out those peas and onions, yet.

Since she was pretty shaky last week, we decided to hold off on the chemo.  So, that was today.  She got her blood drawn and eventually did get the treatment.  However, Dr. Riley was not thrilled with the blood work since Marye's liver is not functioning well.  I'm not sure of the physiology of it, but the enzymes and the bilirubin were all pretty high.  The bilirubin is down from 6.9 to 1.9.  That's an improvement from last week, but still a concern.  The onc thinks that her liver is still recovering from the irritation last week.  I can buy that.  She bumped back next week's chemo to the following week and we'll check her labs again on Thursday.  As of this writing, Marye is having some nausea that we (again) are attributing to the chemo today.  We'll see.  She's not jaundiced and I'll check her in the sunlight tomorrow to keep an eye on that.  She's had ERCPs in the past that did not go well or caused infection, so I know what to look for and won't hesitate to bring her downtown if she gets any fever or anything.

Moving forward, we're just watching her liver and hoping that it settles down after last week's shenanigans, and she should be back on a regular chemo schedule in the weeks after that.  The ERCP that was scheduled for Dec. 17 is no longer necessary.  Otherwise, things are just moving along.

This post has no title

I'm tired of trying to come up with creative post titles that say the same thing week after week.  Sorry.  We got the results of Marye's bone and CT scans yesterday.  The results are mixed.  In her liver, the main tumor remains unchanged at 6 cm, the smaller tumors have gotten smaller, and the cancer in her spine has grown.  I wondered if this is normal (that the chemo would work on some cancer but not all of it), and Dr. Riley told me that it is.  Normally, she would keep her on the Xeloda, since it's working fairly well on the cancer in the liver, and boost that with some radiation to her spine to keep that from getting worse.  But since Marye was very unhappy with the side-effects of the Xeloda, we went ahead and changed chemo and will hold off on the radiation to see if the new drugs have any effect.  Really, since the Xeloda wasn't working on all of the cancer, we probably would have had to come off of it after the next CT scan, anyway.  So, two down (chemo drugs, that is.)  The good news is, Marye is not feeling any pain in her back from the lesions on her spine.  The doctor was surprised by this, and I'm glad, too.  If her back does start hurting, she will get more powerful pain meds and probably some radiation, too, to treat that cancer directly.  The other good news is that many of the symptoms that Marye was feeling lately have eased, so it looks like the Xeloda was, indeed, responsible for them.

Moving on, Dr. Riley has prescribed Gemcitabine, aka Gemzar as the next round of chemo.  It is an infusion that Marye will get for two weeks, then a week off.  This is supposedly a very mild drug, so the side-effects should be minimal, and her hair will continue to grow back.  She's no longer bald!  Also, the schedule is flexible, so she could go two (weeks) on, one off; every other week; etc.  It depends on how she handles the side-effects and of course, its efficacy.  To that point, there will be a new CT scan the first week of January. So until then, she'll have to go down and get the chemo every week or so.  Add in the (still) monthly Xgeva shots for bone strength and the ERCP on Dec. 17 to replace the stent, and it's going to be a busy holiday season.  Remember the Xgeva shot is to strengthen the bones since she has cancer in her spine.  It's an osteoporosis drug like Boniva.  This is not like the Neulasta  that she was taking to spur white-blood cell growth in the bone marrow.  That drug was for general immune system boost, not bone strength, but it caused a lot of pain in her bones.  The Xgeva doesn't seem to have any negative side-effects.

Ok, one more thing.  I usually mention the overwhelming fatigue that Marye suffers from.  I usually attribute this to the chemotherapy, but with Marye not having any chemo in the past few weeks, I again asked Dr. Riley about this.  She explained that this is a condition called Cancer-Related Fatigue and that the vast majority of cancer patients experience it.  A little research reveals myriad authoritative links and scholarly research on the condition.  The bottom line is, there is no definitive cause.  It can come from the chemo, or the inherent pain from some cancers.  It could also come from the metabolic drain that the cancer tumors cause --basically, the tumors are robbing energy from the rest of the body, -- or even hypothyroidism.  (That last one is something that Dr. Riley will check during the next blood test.)  Of course, it could be from a combination of all of these factors.  The only treatment strategies are things that she has tried: Ritalin, caffeine, rest, shrink the tumor, etc.  Other than that, it's just something that cancer patients have to deal with.

I bring this up because I know that I mention her fatigue every single post.  I hate to sound like a broken record, and frankly, who among us doesn't feel tired most of the time?  So, I won't mention it as much in the future.  But the whole point of this blog is to pass on information on how Marye is feeling, and to ignore the fatigue is to deny a major part of this experience.  It's debilitating and not unusual for her to spend a whole day, or two or three, in bed, utterly unable to get up.  That is one of the most profound effects of having cancer for a lot of people, and probably the most distressing thing to her.  I'm not happy that there really is no medical answer to this, but giving it a name and knowing how prevalent it is among cancer patients at least makes me understand it more -- and that helps.  It takes a lot of energy to keep holding out hope that "the next chemo drug" or "upping the Ritalin dose" will ease the fatigue problem, only to be disappointed once again..  So it is now something that I know that we have to accept and continue to work into our lives.

Whew, I wrote a book here, but there was a lot to say.  The summary: Marye's CT scan wasn't great, but it wasn't all bad.  The new chemo should be ok, although the fatigue will continue.  Next CT scan is in early January, ERCP is on Dec. 17, near weekly visits to the cancer clinic for various treatments between now and then.  Overall, Marye is feeling ok and sleeping a lot.  And she's happy.  I think that that is the biggest take-away for me.  She's still happy.

A little bit louder and a little bit worse

Hi folks.  Not too much information today, but we're watching some things.  Marye finished the second round of the Xeloda last week, and this is her "off" week.  But she's been complaining of some side-effects from the drug that have been getting worse.  No need to get into too much detail here, but she's been feeling generally lousy.  So, we saw the oncologist, whose first impression was that Marye looks really good and she's ready to increase the dosage.  But Marye really doesn't want to do that.  In fact, she wants to drop this therapy altogether and try something else.  I have my own thoughts on that, but, I have to keep in mind that no matter how effective the chemo may be, we still have to balance the side effects.  If Marye feels terrible all the time, what good is that?

Anyway, Dr. Riley is not convinced that it's the Xeloda that's causing these side effects, but decided to keep Marye off of it for one more week to see.  If Marye starts to feel a little better, than we can assume that the Xeloda is to blame and either reduce the dosage or change drugs.  The other question is if the Xeloda is even effective against the cancer.  Of course, that's really the most important thing.  So, we've got a bone and CT scan scheduled for Nov. 15, then an appointment with Dr. Riley to talk about the next step.  If she goes off the Xeloda, the next drug will be another infusion.  It's a two weeks on/one week off schedule, so we'll have to deal with that.  But until the CT scan, we just have to sit tight.

That's all for now.  Unless there is some change in the next few weeks, I probably won't post until Nov. 20th.

By any other name...

Today we start the second cycle of Xeloda.  A cycle consists of two pills, twice a day, for two weeks, followed by one week off.  So, three weeks ago, when Marye started the first cycle, we were somewhat disheartened to discover that the side-effects aren't much different (or better) than the Taxol.  It's deceivingly simple and low-key, until the drug sets in.  On the last cycle, Marye was pretty well laid out for a day or two with nausea, but then settled into a rhythm of feeling lousy for most of the day with a brief period in the late afternoon when she felt pretty decent.  Of course, the fatigue continues.  I say it's deceiving because by just taking a few pills, you don't really get the sense that you're actually on chemotherapy.  It kind of blends in to the myriad other pills that she takes all day.  But, it is chemotherapy, and it seems to be affecting her like any other chemo would.

She took the last week off in order to give her body a chance to recover.  The only tests she's had were for liver function, since that is necessary for the drug to activate.  The tests were incredibly normal.  Blood counts, bilirubin, magnesium, potassium, etc.... all good.  So now that she's on her second cycle, we're watching for nausea and a continuation of the other symptoms, e.g. fatigue, general lousiness, etc.  We won't get a CT scan until after the third cycle, in six weeks.  Crossing fingers until then.

A new phase, indeed

We saw the oncologist on Thursday, and everything I said in the last post was accurate.  There are actually TWO sites of metastasis in Marye's spine, and approximately 15 new lesions in her liver, with the largest of those measuring about 2cm.  The original tumor now measures 6.2cm across.  It's definitely progressing.  The new drugs Marye has is Xeloda for the cancer and Xgeva to strengthen her bones and prevent any "skeletal events".  Basically, it's an osteoporosis drug.

The Xgeva is given by injection every month, so that's not really a big deal.  Also, I did find out that metastasis to the spine is not really that big a deal, since it's not life-threatening.  It can be very painful, but they found this early and Marye hasn't had any pain from it yet.  By treating the tumor and giving her the Xgeva, she shouldn't have too many problems in that area.

It's really the Xeloda that is tricky.  It's a prodrug, meaning it's given in an inactive form, then activates through regular metabolism.  With this drug, it's the enzymes produced by the liver and the tumor, itself, that activate it.  There are no more infusions; Marye takes two pills in the morning and two at night for 14 days, then she gets a 7 day break.  Today was her first dose.  Since the liver enzymes are really necessary for this drug to work, they have to take blood every week for a few weeks to make sure that her liver is functioning properly.  Once they're confident that she has good liver function, she won't have go down to the hospital except for the monthly Xgeva shot.

As for side-effects, the Xeloda is supposed to be fairly mild.  Since the drug attacks fast-growing cells, similar to other cytotoxic drugs, she probably won't grow her hair back, but she may.  Already, from her first dose this morning, she's complaining of feeling "weird", with a hint of a metallic taste in her mouth.  I don't know if that will subside or just get stronger.  She's taking it twice a day for two weeks, so I'm not confident that that will go away.  In any event, she isn't nauseous, but she is really fatigued, so she's just sleeping away.

  As for efficacy, there have been pretty good results, but there's no way of telling for how long.  Again, the cancer will eventually mutate and adapt to this drug the same way it did to the Taxol.  Then we'll be talking about another drug.  Hopefully, that will be later rather than sooner.  Over the next few days, I'll post updates on how she's doing.  As long as her liver is functioning (it was this week), the drug should activate and hopefully work on the cancer.  The next CT scan is after 3 cycles (9 weeks), so we just have to wait until then to see how it's working.

-Chris

It was a good run

It's been five months since Marye started her current run on chemotherapy.  I posted a few months ago that with cancer, no news is generally good news.  Well, today I have some news.  Recently, we've seen the tumor stop shrinking from the chemo.  Dr. Riley tried to reassure us that it's not necessarily a bad thing; it could be just a plateau period for the tumor.  I wasn't so confident.  This week, we got the results of the CT and bone scans.

The main lesion went from 4.6 cm to 6.2 cm, and there are about 15 new lesions in the liver, measuring as much as 2 cm across.  Also, the bone scan showed some evidence of metastasis in her spine.  So, that's pretty disheartening, although I'm not sure what it all means, yet.  We're meeting with Dr. Riley on Thursday to find out what the next step is.  She already told us that she's stopping the Taxol (since it's obviously no longer effective), and will be giving her a different chemo drug that comes in a pill form.  She also mentioned a shot (not an infusion) for the bone issues.  I'm thinking she's going with Fosamax, but again, I won't know until Thursday.  Dr. Riley did say that the pill she's going with has shown to be pretty effective.  I'm hoping that the side-effects are mild.  Maybe Marye will actually grow her hair back.

In the meantime, we are both still processing this, and there are a lot of unanswered questions.  But to me, it feels like we've entered a new phase in this adventure.  I'll post again on Thursday or Friday after we see the oncologist.  Expect to see some more frequent updates posted here in the coming weeks/months.

Very quiet around here. Almost eerily so.

File this under the "no news is good news" category.  Marye had chemo two weeks ago and is on the usual cycle.  So, that's a good thing.  General fatigue, but not too bad.  Last time we talked to the doctor about her severe fatigue over the summer, and she gave us some tips about getting on a better schedule with the Ritalin and taking it more regularly.  Since then, Marye's made an effort to get up earlier and take the Ritalin when she should.  The plan seems to be working.

We haven't had any indicators of the cancer tumor markers in a while-- Dr. Riley wanted to start checking them every three months, to coincide with the CT scan.  So, this week, we'll get the tumor markers checked, and the CT scan is scheduled for the first week of September.  It feels as if we're getting settled down into a long-term, chronic treatment cycle.  Crossing our fingers that it remains that way.  Again, someday, we'll get the word that the Taxol isn't working anymore, and we'll have to change drugs.  That day isn't here, yet.  So life goes on.

So, that's it.  Chemo this week with tumor marker check.  I'll post that info when I get it.  Until then, I hope everyone is well.

The first hundred is always the easiest

Due to some scheduling issues, Marye had her chemo on Tuesday of this week, instead of the usual Thursday.  Of course, late into the chemo cycle she was feeling pretty good, and not even needing her usual afternoon nap.  That's all changed now.  She had her therapy on Tuesday, the Neulasta shot on Wednesday, and is now suffering the usual achy bones and minor upset stomach.  All in all, though, she's not too bad off.  Actually, she's really not feeling well, but no worse than usual right after her treatment.
The real update this week comes from our conversation with the doctor.  Apparently, the cancer has plateaued, or stabilized.  The tumor markers from three weeks ago were split (one went up, the other down); and with the small change in the tumor from the CT scan last month, it doesn't seem to be doing much.  While this is certainly not the great news that we're used to about the cancer dramatically shrinking, Dr. Riley assures us that this is normal, and we are just happy that it's not growing.  Again, when cancer metastasizes, the best they expect to do is just to stabilize it and manage the side-effects of the chemo.

When asked if this is the typical life-cycle of the particular chemo drug that Marye is on, the oncologist really begged off.  There is just no "typical" way these things go.  At some point in time, there will be definite growth in the tumor, and we'll have to go to another drug.  But that could be months or even years away.  For now, there is no further metastases, Marye is having a decent quality of life, and she's handling the chemo well.  So that's it.  We just settle into this rhythm for a while.

The thing that struck me about this development was that I was used to seeing good results from the chemo.  The original tumor marker numbers were over 1450 and eventually went down to 150 before she had to get off chemo in January.  Then they climbed back up, but dropped again once she started chemo again in March.  So, now they're stable.  I look at it like a really heavy person starting a diet and exercise program.  When you weigh 600 lbs., that first hundred is really easy to lose.  Just get up and walk around and switch to diet soda.  But after that, it takes a lot of actual work.  That's where we are, I guess.

Anyway, it looks like we'll have a relatively quiet period here for a while, and that's a good thing.  She's got chemo in another three weeks, so if you don't hear from me before then, all is well.

-Chris

Good progress

It was a busy week, relatively speaking.  Last Wednesday, Marye had a CT scan at U of L to take a look at the tumor.  We were expecting to see the tumor shrink, based on all of the chemotherapy she's had and because the tumor markers were down from the last blood test.  The next day, she had to go to Norton for another ERCP to get the stent replaced.  That went off perfectly, and the doctor put in a fancy, new, metallic stent that will last 6 months instead of the 3 months for the plastic one.  It's much more expensive, but will save her having to go through the procedure so frequently, so it actually will be less expensive over time.  He's been waiting to put in the metallic stent because he kept hoping that she wouldn't need it, eventually.  That doesn't seem to be working out, as he said her bile duct was still pretty blocked without it.  Anyway, that should hold her over until November or December.  One less thing to worry about for the short-term.

During our visit to the oncologist yesterday, we got the results of the CT scan.  The tumor went from 4.2 x 4.2 x 3.9 cm to 4.4 x 4.1 x 3.6 cm.  While this shows very little actual shrinkage, the report noted lower central density of the tumor, indicating necrosis (it's dying).  Also, the second lesion went from 2.2 cm to 0.8 cm, so that's great news.  The chemo is effective.  No new lesions in the liver or anywhere else and everything looks normal.

The only bad news in all of this is the debilitating fatigue that Marye suffers from.  Even the steroids that accompany the chemotherapy haven't really had much effect, and she feels weak much of the time.  Sometimes she changes up the pain and nausea meds and finds a little improvement in her daily fatigue levels, but it's fleeting.  Overall, though, she's not nauseous or vomiting and the cancer is reacting to the therapy, so we'll just continue on this course of action for the foreseeable future.

There is nothing scheduled until her next chemo in three weeks, so if you don't hear from me, then everything's ok!  Hope everyone is enjoying their summer!

-Chris

Update long in the making

It's been exactly one month, I think, since the last update.  That's good, mostly, since there really has not been too much going on.  With cancer, as a rule, no news is good news.  There actually have been some things going on behind the scenes, but we've been pretty busy and so updating the blog moved lower down the ladder of important stuff to do.  But, we just got some good news, so I'll bring everyone up to date.

The last update had Marye just getting back on chemotherapy after a two month break due to her sick gall bladder.  Since then, she had another treatment, followed by a call from Dr. Riley telling us that her tumor markers were still climbing.  Specifically, the CA 15-3 went from 356 to 441, and the CA 17.29 went from 330 to 390.  There were several possible explanations for this: 1) the chemo hadn't had a chance to work, yet, since Marye had only one or two treatments, 2) the tumors could still be growing despite the chemotherapy, 3) nothing at all.  Maybe the tumor markers were coming from something besides cancer.  In any event, the plan was to wait until the May 31 treatment to check the markers again.  If they continue to climb, the plan is to get a CT scan to see exactly what the tumors are doing.  Since Marye has a CT scheduled for June 13, anyway, this would not have changed much.

So, we just got the results of Thursday's blood work, and the CA 15-3 was down to 341(!) and the CA 27.29 only fell to 389-- but at least it's going in the right direction.  The CT scan is still scheduled for the 13th, and she is due to get the stent replaced with another ERCP on the 14th of June.  My guess is that since she still has tumors floating around her liver, the Dr. Vitale will continue to keep the stent in there, even if it's not clear that she needs it.

Looking forward, if the tumors do stop responding to the Taxol that she's taking, Dr. Riley will find another chemo drug to use, then we start this whole process over again.  That could happen in a month, a year, or not at all.  There is just no way of knowing how long the drugs remain effective.

In the meantime, Marye is managing her nausea pretty well.  She still suffers from debilitating fatigue.  That's pretty much a given.  So much so, that when I tell people "she's not doing too badly", I usually don't even mention that she's pretty well exhausted by 2 pm every day and needs to take a nap.  My point is that even though she is not suffering from the stereotypical side-effects of chemotherapy (vomiting, constant nausea, etc.), it's still a pretty lousy way to live.  "Not doing too badly" is very relative.  Also, she's bald.  Overall, though, she's comfortable most of the time and I'm confident that she's getting the best treatment available.

To that last point, I'm always interested in how well doctors keep up with the latest research that comes out about their specialty.  I use a Google news alert set to "Breast cancer" and "Breast" to read the latest articles, myself.  (That last one is rather amusing, sometimes.  Not every story with the word "breast" in it is about cancer.)  Anyway, I try to keep my eyes peeled for new information and often ask Dr. Riley about it when I see her.  As you can imagine, there are so many different types of breast cancer, that many of the studies don't even apply to Marye's situation.  But I always get encouraged that Dr. Riley not only keeps up with this news, but often travels to conferences around the country to meet with other oncologists.  This week she is at the ASCO conference in Chicago, IL, getting presented with much of the same information I see in the news.  She's just about as up to date on this stuff as I am, so I'm grateful.  It's important that your doctors (in any specialty) stay in touch with the latest research.  There are new things coming all the time.

Ok, that's it for now.  Marye had chemo last Thursday and is just now starting to get over the bone pain from the Neulasta shot I gave her on Saturday.  So, she should be ok until the next chemo, although very, very tired.  I should post again after we get the results of the CT scan and the ERCP next week.

-Chris

More of the same

When Marye had her gall bladder attack in January, Dr. Riley (oncologist extraordinaire) explained to me that one worry was that if Marye is able to get back on chemotherapy, she is now weaker and may not bounce back as easily.  Unfortunately, that seems to be what is happening.  Marye went back on chemo two weeks ago today, and as feared, she hasn't really felt well since.

Like before, there is none of the classic nausea and vommiting due to the chemo, but she has suffered from the same low-grade nausea and upset stomach (two different things) that she's had since January.  The first few days after her treatment were actually pretty good, thanks to the high-dose steroid that she takes.  But once that wears off, Marye is stuck with the same severe fatigue/general feeling of lousiness that she had before.  <sigh>

Last Friday, we had an appointment with Dr. Huber, a palliative care specialist.  She is an oncologist, but focuses on quality-of-life issues and trying to manage symptoms and side-effects.  Seeing her is a last chance-effort to get a handle on the side-effects.  Marye was not complaining too much at the time since I think the steroids were still impacting her and she does feel a little better after being off the aromatase inhibitor.  Dr. Huber prescribed Zofran for nausea, since Marye hasn't tried it in years.  But after a few days, it doesn't seem to help too much and Marye has not been feeling well, at all.  The roller-coaster is in full effect- she'll wake up feeling ok; by early afternoon, however, she's ready to lay down again until about 7-8 pm.


Every once in a while I go back and read this blog to kind of refresh my own memory on what was going on at any particular point in time.  And although there have been many times that Marye has been feeling really crummy, reading the blog puts everything back into perspective for me-- specifically, what has been the general trend of her condition.  It helps to do that since I tend to get lost in her day-to-day condition and need to take a step back to get an idea of is she improving or not over the long-term.  Sadly, it seems that Dr. Riley's assessment in January was fairly accurate: Marye just does not have the strength that she had before and the chemo is taking a real toll.  For now, though, chemotherapy is the course we're on.  She has another treatment next Thursday and every third week after that.  I imagine that after about three or four treatments she'll get a CT scan to see how it's affecting the tumor(s).  Then we reassess. 

It's going to be a long summer.

As expected

I apoligize for not posting on Friday as promised, but there really was nothing exciting to report.  As expected, the surgeon is convinced that treating the cancer is more important than removing Marye's gall bladder right now.  He's right, of course.  The complications of a cholesystectomy far outweigh any possible benefit from the procedure, especially since she needs to be on chemotherapy as soon as possible.  In addition to the other things we already knew, we learned that starting chemo soon after surgery really complicates the healing from the incisions.  That makes sense since chemotherapy affects her immune system, which is obviously important anytime they perform major surgery.  It would be at least four weeks before she could start chemo, and that's too long.  So..... Marye is scheduled to go back on chemo on Thursday morning.  This is nothing new- or unexpected.

In my last post, I talked briefly about taking the challenges of cancer and incorporating them into your life without complaining too much.  I received a lot of positive feedback from readers of this blog who were moved by that sentiment.  So it's with some sadness that I have to report that although I really believed those words when I was writing them, I haven't been feeling that way lately.  I know it's natural to go through ups and downs of dealing with a challenge of this magnitude (cancer is but one of any number of situations that present similar challenges), but getting ready for chemo this time has been tough, especially for me.

I think a part of it is that she's been off therapy for a few months, so it was like a mini-remission, of sorts.  When this whole thing started, we were told she would need chemotherapy for the rest of her life.  Because the cancer metasticized, she would never go into remission.  This was something that we knew and accepted.  But then she got sick with her gall bladder, and even though that was terrible and she almost died, it gave us something else to focus on besides the cancer, especially since she really couldn't take the chemo.  However, that is now over, and the cancer is front and center again.  So while it is something that is very familiar to us, it is kind of like running head-first into the brick wall of cancer all over again.  Or, more accurately, like I said in my last post, just when you get into a nice rhythm, cancer slaps you in the face to remind you that it is still there.

Anyway, that's where we stand.  She's got chemotherapy on Thursday.  Her hair will fall out again.  The good news is that she doesn't actually fear chemo since she's tolerated it very well, thus far.  But there are side-effects-- more fatigue, neuropathy, feeling generally run-down.  Also, we've yet to see how she handles it since her gall bladder issues.  She's not as strong as she was, so it may affect her more this time around.  Time will tell.  I should post again sometime over the weekend with an update.

Thanks for listening.

-Chris

The break is over

As I've said in the past, cancer is all about not letting you get too comfortable with your situation.  The key to living with cancer is dealing with the constant sense of uncertainty.  Just when you think you've got a nice rhythm down, cancer will throw you a curveball, just to remind you that it's there.  It is my belief that, no matter how the disease turns out it in the end, it's important to take these curveballs and try to incorporate them into your life.  It doesn't do any good to bemoan the many challenges of cancer.  It's also not necessarily possible or useful to stay constantly positive.  It's tiring and not always based in reality.  But it helps if you can take the challenges in stride.  Deal with whatever news you get, formulate a plan, implement the plan, and monitor the effects.  When the plan stops working- as it always does, eventually- start all over.

Anyway, we got the word today that the tumor markers are rising faster than we'd like.  They went from 200 last month (already up from the month before) to 356 this month.  We were waiting for this number as it will impact the decision on whether to take out Marye's gall bladder.  She is still on the fence about that (balancing the risks vs. the uncertain benefits).  Well, it may be that that shipped has sailed.  We're going to see Dr. Vitale on Thursday to talk about the surgery.  Our first question is, what is the best-case scenario for Marye being strong enough to start chemotherapy.  Dr. Riley says that if it's two weeks or so, that would be ok.  But if it is much longer- say, six weeks- she'd rather put the gall bladder on the back burner to get the chemo going first.  So, the aromatase inhibitor doesn't seem to be working well, and Marye's break from chemo is going to end within the next week or two.

Again, we're still waiting to decide on the gall bladder situation, but it looks like the cancer is going to take top priority for now.  I'll post again on Friday after we see Dr. Vitale and talk to the oncologist again.

-Chris

CT scan, ERCP, and Stents

Good morning, everyone.  It's been a busy week inside of Marye's belly.  When we last left you, we were waiting the results of the CT scan from last week and she has been suffering through pretty much constant nausea and pain caused by the aggravated gall bladder and gall bladder catheter.  Dr. Riley called me early this week to let us know that yes, the tumor has grown- but not by too much.  It went from 3.7 cm to around 4.1 cm across.  There is also a second, smaller tumor that is roughly 1.5-2.0 cm across.  That's not great news, but it's not unexpected since Marye has not been on chemotherapy in over two months and the tumor markers have gone up.  Since the cancer is growing, it needs to be addressed; but it is slow-moving, so we have some time to deal with her sick gall bladder before she goes back on chemo.

We started that process on Thursday with another ERCP by Dr. Vitale, Biliary tract doctor, extraordinaire.  First, we discussed getting the gall bladder removed to ease her discomfort and give her a better quality of life.  Dr. Vitale is not keen on removing it due to the fear of complications and the fact that it is not causing serious problems.  According to him, with the inflammation she had/has there, there will be adherences and other abnormalities that raise the risk of cutting her open.  He said it will look like "someone poured a bottle of glue all over the gall bladder" and surrounding area.  For this reason, it's not possible to do the cholesystectomy laparoscopically.  He's going to have to do open surgery, further increasing the risk.  Even with the best surgeon (himself), he estimates a 20% chance of complications, with a 30% chance that the procedure won't decrease her discomfort.  Remember, she still has a lot of other issues in her abdomen (cancer) that could be the source of the nausea/pain.

On to the procedure: he did the ERCP and allowed me to sit in the control room to observe it live on the monitors.  It helps to be educated about these procedures.  I felt like a groupie getting backstage at a rock concert.  Dr. Vitale's excellent Fellow, Dr. Barr sat with me and narrated during the procedure.  I can say it was truly fascinating.  Vitale is like a fighter pilot, navigating his way through her GI tract and sending down tools to remove and replace the stent.  Pics below!  The whole thing took about 20 minutes.  Dr. Barr says it would have taken him over an hour!

After the ERCP, I sat with Dr. Vitale again and talked again about removing her gall bladder.  Again, he said that he recommends against it "unless he really has to".  I explained to him that although it doesn't appear to be causing her any medical issues, she really is uncomfortable and we believe that taking the gall bladder will help that.  He conceded that it could be the cause of her nausea/pain and scheduled us for a consultation and follow-up surgery in two weeks.  He will do the procedure if she wants it, but he wants to schedule an entire afternoon for her to make sure he has enough time to go slow and do it right.  He also wants her to fully understand the risks involved.  The two weeks will also give her a little time to see if the new stent might ease her discomfort.  Dr. Vitale also removed the catheter from her gall bladder, so that will likely help, as well.  She might decide that she's feeling better enough to not need the surgery.  If that's the case, we'll go back to focusing on the cancer (chemotherapy).  In the meantime, the Aromatase Inhibitor should keep the tumor from growing too quickly and she can get on chemotherapy in another month or so.

On to the pics!  You can also check them out on my Picasa photo album.

One step back...

I think I've used that post title before.  Sorry.  Anyway, it's been a while since I posted, so I wanted to give everyone an update.  Since the last post, Marye has been feeling ok, relatively speaking.  She still suffers from fatigue and lethargy, but nothing concrete that she can put her finger on.  That's good in a way, since she's not really having a lot pain.  She had blood work done last week, and on Monday we found out that her tumor markers have increased to over 200.  The last number we had was 160, so it's definitely moving in the wrong direction.  This isn't exactly unexpected, since she hasn't had chemotherapy in about two months.  However, she has been on an Aromatase Inhibitor, which stops the producution of estrogen in the body, hopefully starving the tumor of what it needs to grow, but the AI usually takes 4-6 weeks to have any effect.  So the question is: do we go back on chemo or give the AI a chance to work?

We'll have an answer in the next week or so.  More important than the tumor marker is a CT scan, so we can see exactly what the tumor is doing.  We expect that to happen soon.  After that, Dr. Riley will consult with Dr. Vitale to decide if Marye is strong enough to go back on chemo.  Those conversations are forthcoming, so I expect the next week to fairly busy.  One thing about cancer, it never lets you forget who's boss.  Just when you get into a rhythm, it pokes you with a stick to get you moving in another direction.

So, that's it for now.  Marye is fairly comfortable, aside from the aforementioned fatigue.  She's eating well and her hair is actually growing back, much to her chagrin.  Of course, that won't last much longer.  I hope everyone is well, and you'll be hearing from me soon.

Another long week

Unfortunately, no news is not good news this week.  Marye was quite busy with doctor's appointments all week.  She started with the pulmonologist and a chest x-ray.  There was some fluid in her lung, known as pleural effusion, but it wasn't enough to be worried about.  The doctor wants to see her in two months.  I'm afraid that's the extent of the good news.

Since she's been home from the hospital, Marye has been suffering from a good amount of pain from her abdomen.  We've been attributing that to her sick gall bladder, but it seemed to be getting worse.  She was scheduled to see Dr. Riley on Thursday, and the doctor wanted to get a CT scan to see what was going on in Marye's abdomen.  So, we did that.  The CT scan showed some abcesses in her abdomen that are probably infection.  They also took blood to check on the tumor markers to see what the cancer is doing since Marye hasn't had chemotherapy in five weeks (still waiting on the lab results).

Since Marye is scheduled to see Dr. Vitale on Tuesday about the gall bladder drain tube, Dr. Riley prescribed two fairly generic antibiotics to hold off any infection until next week.  She also gave her an anti-estrogen medication to try to keep the tumor at bay while Marye is off chemo.  Since Marye's cancer is estrogen-receptor positive (ER+), it feeds off estrogen.  Prescribing an aromatase inhibitor slows the body's production of estrogen to keep the tumor from growing too much.  We're also concerned with the amount of pain Marye is dealing with, so Dr. Riley gave her MS Contin (long-lasting morphine).  Unfortunately, the problem is that Marye is suffering from pretty bad nausea and vomitting for the past two days.  We've yet to figure out what's causing it, but we're suspecting the MS Contin, so she moved back to Dilaudid.  As of Saturday night, she hasn't left the bedroom since Thursday night, but she is awake and has periods where she feels ok.  I'm giving her a lot of Gatorade and trying to get her to eat as much as she can.  I'll update again on Sunday or Monday.

-Chris

Hospice care

Since we got Marye home on Wednesday, she's been kind of up and down.  The oral pain medication isn't quite as effective as the IV stuff and she's very, very fatigued.  On Thursday, she was so tired and sleeping so hard that she was borderline non-responsive.  So, I was talking to her oncologist who suggested we call hospice in.  Before you get nervous about that, I found out that there is a big misconception about what hospice is for.  People think that hospice is brought in during the final days or weeks of someone's life- and while they do provide that service, it's much more.  Hospice is about quality of life care, and they will send a nurse in once a week and a nurse tech in three times a week to evaluate and help Marye (and me) getting cleaned up and comfortable.  They manage her medications and (this is the big thing) act as the eyes and ears for the doctor.  So when she does have a bad day (like Thursday), the nurse can evaluate her and give the doctor a good assessment.

In the meantime, when Marye gets strong enough to start chemotherapy again, hospice will stop.  So, it's a good resource and just another tool to have in the bag.  The oncologist said that statistically, people live longer when they have hospice because they are getting better care.  So we'll run with this for a while.

Anyway, as I said, Marye is having ups and downs.  She perks up for a few hours every day and I'm trying to manage her pain.  She's also taking ritalin to give her a boost of energy.  She is off the steroids since they actually weaken the immune system and we're still watching her for signs of infection.  Overall, she's much more stable and comfortable now.

The hospice nurse will be here on Monday morning and we'll get her started.  I'm looking forward to Marye getting some professional care at home to supplement what I'm doing for her.  I'll post again on Monday to talk about how it goes.  Have a good weekend.

-Chris

Seventeen Days

Marye came home on Wednesday, 17 days after first going to the hospital.  Since the last post, there was a bit of a downturn.  Over the weekend, she was walking around, eating well, etc...  On Monday morning, she again began to feel pretty lousy, mostly in her chest.  She had a chest x-ray; that and the PE CT scan both showed more fluid in her lungs that no one could really explain.

They wanted to insert a chest tube (pleuracath) into her lung to let it drain naturally.  They did that on Tuesday, and it did drain a lot of fluid.  By Tuesday night, she was feeling a little better (although not as good as she was over the weekend), and we planned on taking her home on Wednesday.

So, here we are.  It's been 17 days since she's been home, so we need to get her back into a comfortable groove.  She's not as strong as she was before she went to the hospital.  I hope that changes, but it will take some time.  I'll post again in a day or two, with an update on her condition. 

As always, I want to thank everyone for their kind thoughts for Marye.  She appreciates it, as well, but is unable to respond to everyone's well-wishes at this time.

-Chris

Quiet weekend

As I hoped, there were no catastrophes this weekend.  Marye was resting pretty well and her pain situation is slowly getting better.  She has pain from the cholecystitis (gall bladder attack) and from the thoracentesis (needle in the lung).  They're managing it well with the dilaudid, but it is still there.  That said, she's been able to get up and walk around the hospital floor every day and she's eating well.  Her WBC count is good, so we're looking forward to her getting discharged soon.  They need to transition her to an oral pain med (dilaudid) and she might need home oxygen, but there is no reason for her to be in the hospital anymore.

As of tonight (Sunday), she's been there two weeks, and she hasn't been pushing to go home like she usually does.  So I know that she was pretty sick, and still isn't 100%.  But there are no acute problems that can't be managed at home, and it's so much more comfortable on her own couch.

Monday is a new day, and I'll post an update when we get a timeline for her discharge, as well as her condition.  I have a feeling, though, that she'll have some pain for quite some time.  That gall bladder is a nasty booger.

-Chris

A lot of dollars

It was a busy day today.  The plan was for Marye to have a procedure called a thoracentesis, which is using a needle through the back into the lung to draw off any fluid from the pneumonia.  So while we were waiting for that, she had the usual gaggle of doctors and technicians coming in to the room every few minutes.  Another procedure she had was an ultrasound of her heart.  We should get the results of that tomorrow.  In the meantime, her breathing has not really improved at all.  She was able to take a walk around the floor today, so that was pretty good.  But she needs to get back on the oxygen right away.

Anyway, they did perform the thoracentesis and were able to draw off about a liter and a half of fluid from her right lung.  They will do a biopsy on the fluid to see if there's any cancer, but they don't expect to find that.  There will also be a full culture done to check on the pneumonia.  As I write this, her breathing has not improved yet, but it should as her lung should now be able to fully expand.

She was no longer taking any IVs, and the pain is being managed well with the Dilaudid.  I'm not sure yet when she will be able to come home.  I doubt it will be this weekend, but hopefully by Monday she'll be strong enough.  I'll post again over the weekend with any updates.  I'm hoping that it is a quiet weekend.  I'm telling you, if I had a dollar for every time someone came into the hospital room throughout the day, I'd have a lot of dollars.

-Chris

Improvement

I know it's been few days since I've posted, so file this under the category of "No news is good news".  Marye has been showing slow but steady improvement this week.  Her white blood cells are down into the normal range and she is feeling better.  She's still taking dilaulid for pain several times a day, but it hasn't been as bad as it's been.  Also, the dilaulid is not knocking her out as much as it was, while it still eases the pain.  They discontinued all of the IVs and she's taking antibiotics via pill.  Finally, she's been working with the occupational and physical therapy folks, and is able to get up out of bed on her own and can walk without a walker.

On the downside, she still has pneumonia.  There is a fair amount of fluid in her lungs and the plan is to tap her lungs tomorrow, using a needle through her back and into the lungs to drain the fluid off.  They can also run a culture of the fluid to see how infected it is.  Her only realy clinical symptom is her oxygen saturation.  She's currently on oxygen, her levels are good when she's laying down.  Today, though, as she walked around a little, they tested her O2 and it went way down.  Hopefully, draining the fluid from her lungs will help that.  So, it's possible that she will go home on Friday.  The last thing they need to do is to transition her to oral dilaudid for pain.  If she still needs the oxygen, she can get that at home, though it would be better if she didn't need it, obviously.  But it's looking much better, overall.  I'm not sure if they will get everything done in time to discharge her, but it's very possible.  I'll post again on Friday with the results of the procedure and the timeline for discharge.

I'd like to take this time to again thank everyone for their thoughts and well-wishes for Marye.  She's gotten a lot of cards, calls, visitors, etc. this week and they really lift her spirits.  So thanks to all of you.

-Chris

Between a rock and a hard place

Since Saturday things have been fairly stable with Marye and her various conditions.  You may remember that the plan was to observe her until Monday to decide whether to take out her gall bladder.  What they're looking for is how she responds clinically to the antibiotics for the infected gall bladder as well as the pneumonia.  There was a bit of excitement around 3:00 am Sunday morning as her heart started to display a slightly irregular heart beat.  She was never in any real danger, although I admit that my heart rate went up as they paged "stat response" and four nurses appeared in about six seconds with the fibrilator machine.  Anyway, it turns out that her magnesium was low, and magnesium regulates heart rhythm.  Who knew?  The doctors and nurses do, apparently.  I won't dwell on this episode since it was over as soon as they gave her a magnesium supplement infusion; but I learned more about the heart in that hour than I ever even knew existed.  I think it was former SECDEF Donald Rumsfeld who made a comment about how we "don't know what we don't know."  I also would like to take this time to point out that the nurses on this floor are incredibly competent and caring.  I'm thankful that there are people in this world who are so caring and dedicate their lives to the well-being of others.  I know this is their job and they are getting paid, but they obviously do this for reasons other than money.

Back to our story...  We heard conflicting reports through the weekend on whether they were going to do a procedure to either reposition the drain in her gall bladder or just remove the whole thing.  However, today we were completely underwhelmed with the amount of activity from the various doctors.  But Dr. Riley came in a few times and put everything together for us.  The plan was for the radiology team to fix the drain tube.  But they have been looking at the scans and the gall bladder appears to be completely deflated at this point.  So it is both impossible and futile to try to get the drain tube back in there.  Dr. Riley thinks they should just remove the tube, since it's not draining anything at this point.  Also, they cannot rule out that the gall bladder is ruptured.  My question was, if it's a possibility, then why are they not going in to find out.  Dr. Riley explained that there really is no point, since the risk of open surgery is fairly high, given Marye's condition.  So, even if they were to see a rupture, they would not want to open her up as long as she is improving clinically, which she is.  Also, it's not at all certain that they could even see the gall bladder without open surgery, since there is a lot of scar tissue and fluid around it.  So, without being forced to open her up due to acute complications, it's safer to leave it be.  Again, Marye is showing slow improvement, so we're just going to stay the course.

And that's the plan... stay the course.  She is on antibiotics for the pneumonia and the infected(?) gall bladder.  Of course, the problem is that with the chemo and cancer, she is weaker than most people, so whether to do surgery is a matter of risk management.  Unless they absolutely have to, they will hesitate to cut her open; but that makes her recovery slower than it might otherwise be.  We're kind of between a rock and a hard place.

-Chris

Fractals

A fractal is a geometric shape or pattern in nature that is made up of smaller parts that exhibit the same pattern.  For instance, a tree is made up of branches, each of which looks like a small tree.  Or a snowflake is often made up of smaller geometric shapes that, in turn, look like snowflakes.  Well, this past few months has been a fractal, as well.  I said yesterday that it felt like I was on a roller-coaster.  The day started off well, then went downhill as they discovered the pneumonia and the doctors scrambled to develop a plan.  Throw in a little miscommunication late in the evening, and you can see my point.  But if that one day was a roller-coaster, it was also part of the larger roller-coaster that was the entire week.  And that week was part of the even larger roller-coaster that has been the past six months.  See where I'm going with this?

Anyway, in typical roller-coaster fashion, today is looking much better.  After I had a chance to sleep on yesterday's events, I cooled off a bit and recognized that the miscommunication was not a huge, systemic problem, but rather what I like to call an "opportunity for improvement."  I decided that there was no way that any surgery (or any other procedure, for that matter) was going to take place until I talked to the attending physician.  They must have read my mind, because Dr. Vitale and Dr. Smith both came in this morning to talk to Marye and me.  Well, just me, really, since Marye had just had a shot of dilaudid, so she was pretty well out of it.

But the good news is that they don't want to operate just yet.  She is stable, and although her WBC count is still high, the other numbers regarding the various types of WBCs are looking better.  They would rather not operate until the pneumonia is under control, so they're going to just watch her and reevaluate on Monday.  If she does not improve (or gets worse), then they will likely go ahead and take her gall bladder.  If she does show improvement, they might decide to leave the gall bladder in place with the drain so she can get back on chemotherapy sooner.  The drain can stay in indefinitely, although they are not confident that it is exactly the right spot.  So they may decide to try to reposition it.  Again, though, she's in a holding pattern until at least Monday.  She is in the Oncology ICU, so if there are any rapid changes for the worse, the staff here is qualified to handle it.

For now, things are quiet.  She's resting well, and I'm calming down.  I'll post a quick update tomorrow, but we shouldn't have too much activity until next week.  Have a great weekend.

-Chris

She's got some gall (bladder)

What a roller-coaster on Friday, and Saturday doesn't look to be much better.  First, the chest x-ray showed that Marye does, in fact, have a slight case of pneumonia.  So they added several new antibiotics that can fight respiratory infection.  Then they did a CT scan on her abdomen to get an idea of what is going on with the gall bladder.  At first, the doctors told me that it looked like there was no fluid in it and it was almost down to its normal size.  Later, though, I read the report and it said that the drain tube did appear to be outside of the gall bladder and that the whole thing was still distended.

Then they started making preps to have surgery on Saturday to either remove the gall bladder or maybe just try to fix the drain tube.  We also theorized that they were just reserving the OR in case they wanted to do surgery.  Who is "they", you ask?  I don't know.  At this point, everyone was deferring to Dr. Vitale (at Norton) who was in surgery all day.  I also hear a lot about "the surgeons", as if they're some mythical group of super-docs who never show up until the very moment that they're needed to save the day.  Sounds a lot like Coast Guard aviators.  Anyway, we heard that Dr. Vitale was going to show up and give his blessing (or not) to remove her gall bladder.  But by 8:00 pm, he still hadn't.  However, one of the (junior) surgery residents did show up and informed us that they definitely planned on doing laparoscopic surgery in the morning.  When I asked him who ordered it, he told me the Chief resident did with the blessing of the attending physician, who is a partner of Dr. Vitale's.  Ok, then.  Sign the paperwork for Doogie Howser and he's gone.

Not five minutes later, Dr. Vitale, himself, walks into the room (it's 9:00 pm by now) and asks, "what's the latest?"  So I told him about Doogie and that they're planning on operating in the morning, to which he says "I don't think that's right."  One phone call to his partner later, and he confirms that they only reserved the OR in case they want to operate.  There are still a lot of reasons NOT to operate at this point, including (but not limited to): the gall bladder is still very infected; she has pneumonia; her WBC count is still very high; her immune system is weakened due to the cancer and chemotherapy.  Dr. Vitale tells me there are two types of infection: abscess, which you can see on the CT scan; and infected tissue, which you can't.  The only way to ensure that they will get the entire gall bladder and any surrounding infection is probably to open her up, and he doesn't think that that's the right thing to do, yet.  So, they may go in and try to re-position the drain tube to get more abscess juice out, or maybe not.  At this point, I don't think anyone knows what the plan is.

All I know is, I'm not going to listen to any more residents about what is going on with Marye's health.  For now, she's sleeping with the help of her new friend, dilaudin.  I'll have more info tomorrow.

Thanks for listening.

-Chris

Still Fighting

Ok, there has been a lot of activity in the past 72 hours, and it's not over yet.  But I'll try to get everyone caught up.  On Wednesday, they did the cholesystogram, and the initial report had the drain tube in the right spot.  This was backed up by the amount of horrid-looking bile that was draining into the bag.  She still had a lot of pain in her belly, but her gall bladder is still severely inflammed.  Over the past few days, the amount of fluid draining continuously fell, which totally made sense.

The other major symptom she had was the high white blood cell (WBC) count.  That has gone up and down daily.  They take a blood draw twice a day, and it went from 40, to 32, back up to 38, etc...  She has no fever, but that could be a result of the steroids, or her weakened immune system, or both.  Well, today, the doctor came and explained that they revised the initial to say that the drain was, in fact, not in the proper location in the gall bladder.  It definately started out right, but it can pull out very easily, especially if the swollen gall bladder retracts somewhat once it starts draining.  Also, she started coughing up some, today.  That makes sense, since she's been in bed since Sunday.  So she got another chest x-ray to make sure she doesn't have any pneumonia.

Moving forward, the plan is to get another CT scan to see if there are any other areas of abcess (infection) in the abdomen, then have the radiologist attempt to replace the drain tube in the gall bladder.  If that doesn't work, then they'll have to do it on Saturday in surgery.  Her symptoms pretty much make sense with what the theory is about the drain tube.  If it started to drain well, then her WBC count would certainly go down.  But if it later slipped, then the infection could have taken hold again, accounting for the WBC spikes.  She is on a very potent antibiotic, Zosin, which is probably helping to keep it at bay.  The longer-term plan is to get the infection under control, then wait a few weeks before they try to remove the gall bladder.  Waiting will allow the inflammation to go down and increase the chances that it can be done laproscopically.  But that's still a ways down the road.  For the time being, we're just trying to get this infection under control and get her comfortable.

I'll post more as I can.  I'll update again tonight with the result of the drain tube procedure and CT scan.

-Chris

The word of the day is...

dilaudid, aka hydromorphone. 

Tuesday started with the usual round of junior doctors waking us up at 6:00 am.  Of course, they can't offer anything useful, so they're just practicing.  Overall, it was a quiet day.  Marye has been enjoying the effects of the aforementioned pain medication.  Apparently, this stuff is several times stronger than morphine, and is considered the Egg McMuffin of pain meds.  Within five minutes of getting the shot, her eyes start to glaze over and she becomes less coherent, spouting nonsensical sentences to the nurses.  Eventually, she drifts off to sleep, awaking momentarily only to holler out some out-of-context non-sequiter.  Funny stuff.

In other news, her white blood cell (WBC) count, which had come down after the first few doses of antibiotics, actually shot up again.  As of Monday night and Tuesday morning, they were hovering around 39- way too high.  The doctor theorized that after the procedure to install the drain, the gall bladder might have become more inflammed, temporarily, prompting that reaction.  By Tuesday night, the WBC was slowly falling and stood at 35.  At least it's moving in the right direction.

The other good news was when Dr. Riley came in and sat with us for about an hour.  She explained that the lesions that were visible on the CT scan were likely abcesses, not cancer, and there is not much reason to worry about them now.  The latest tumor marker number was down to about 300, and there is no clinical indication that the cancer is growing.  Anyway, with the infection in her gall bladder, she can't take chemo- possibly for as long as two months.  It would be very dangerous to attack her immune system until the infection is taken care of.  Still, it's scary to stop the treatment, as the cancer could start to rebound.  If they decide to take out her gall bladder, they could then go in and biopsy the lesions.  Until then, she's just going to continue with the same chemo drug (taxol) when she restarts her therapy.

Also, on Wednesday, they plan on doing a cholesystogram, which is a scan of the gall bladder.  They'll inject a dye into the tube that's draining the infected bile, then look at the gall bladder under a flouroscope.  That will give them a good picture of what it looks like.  For the near-term, it looks like she'll be in the hospital until the infection gets under control.  Eventually, I anticipate that she'll go home with home infusion of antibiotics.  Again, they may or may not decide to take out the gall bladder.  She may also have the drain tube in place for some time.  There is still a pretty ugly looking bile/blood/pus mixture draining.  We don't have a lot of answers, as far as timeline goes.  It's just depends on how she responds to the antibiotics.

Overall, it was good to hear that the cancer doesn't seem to be playing a part (or growing), even though she is still pretty sick.  As long as she can fight this infection, I think she'll be ok.  Thanks to everyone for their concern.  She's a fighter.  I'll post again on Wednesday after I know something.

-Chris

As big as a grapefruit

So, after the eventful evening in the ER, Marye finally made it to radiological to get a CT scan.  It was pretty late, so we weren't expecting to hear anything until the morning.  However, we soon got the word that the scan showed Marye's gall bladder was as big as a grapefruit.  Also, there was a lot of fluid around the liver, which could be ascites- or, worse, a ruptured gall bladder.  Now things started to make sense: with the extremely elevated white blood cell count, the bloating in her abdomen, and the extreme pain, it was clear that she had a pretty good infection going on.  I debated with the resident surgeon on the best course of action.  A ruptured gall bladder is a medical emergency, but they weren't positive that's what it was.  By this time, it was 3:30 a.m., and they figured that they would get in touch with her GI doctor within a few minutes.  So I agreed.

She got into the Hematology/Oncology (HemOnc) ICU ward at around 5:30 a.m., and the circus with the residents and interns started promptly at 6:00 a.m.  I won't bore you with too much detail about the peanut gallery of interns that make the rounds with the attending physicians, except to say there were at least 22 doctors in her room before 8:00.  In any event, after talking to the oncologist and the GI doctor, everyone decided to leave the gall bladder in place for now, but to insert a tube to drain the bile/blood/pus from the gall bladder and relieve the pressure.  Also, with the heavy antibiotics she's been getting since Sunday night, her white blood cell count went from 34 to 23.  So, it appears that the infection is getting under control, and with the drain now in place, the rotten, infected bile is leaving her body.  That's the good news.

The bad news is, the CT scan indicates that there are some new lesions in her liver.  If that is what they are, then the taxol she's taking isn't working, anymore, and she'll need to change medication.  But that will be only after the gall bladder infection is clear.  Anyway, Dr. Riley (the real oncologist) came in and told Marye that the tech who reads the CT scan doesn't know what he's talking about and that there are no new lesions.  Only a tumor marker test will tell us for sure.  I'll keep you informed on that as we find out more.

As of 9:30 p.m. on Monday: Marye is pretty well doped up on dilaudid, a very effective pain medication, and numerous antibiotics.  I'm trying to find out the latest WBC count numbers, but she looks a lot better than she did last night.  Future plans: depending on how the infection reacts to the antibiotics, she might stay here for another day or two.  They may send her home with more antibiotics, and will eventually decide what to do with the gall bladder.  If it shrinks down to normal size, they could leave it in place, or remove it laparoscopically.  It doesn't appear that the gall bladder is ruptured.  Once we figure all this stuff out, we'll get back with Dr. Riley to address the possible lesions.  I'll keep updating until she gets stabilized at home.

-Chris

Live. Late-breaking.

I realize it's been quite a while since I've last posted.  Attribute that to the holidays, and the fact that it's been pretty quiet on the Marye front.  When I left you last, Marye was scheduled for an MRI.  So, that happened and it was very good news.  The tumor has shrunk down to 1.3 cm and the tumor markers decreased to 335.  Everything is moving in the right direction.  She's had two treatments since the last blog update and the biggest complication is just the constant fatigue.

Today was different.  Marye had some abdominal pain starting this weekend.  She initially thought that it was gas.  I wasn't convinced, since she hasn't eaten anything that would cause that kind of gas.  Also, she took some Gas-X, and it didn't help, when it usually does.  Anyway, the pain got progressively worse, until she was in absolute agony.  Also, her temperature was down to 95 degrees and she had some serious cold sweats.  I planned on driving her to the ER, but she couldn't even get up to walk to the car.  So I called 911, and the ambulance came to transport her to U of L.  The paramedic had to lift her up and carry her outside.

As of 11:30 pm on Sunday night, she is resting in the ER.  They gave her some heavy pain medication, so she's pretty dopey.  She's also trying to down the quart of contrast they gave her so she can get a CT scan and see what's going on.

Breaking update: she just vomitted up all of the contrast, probably due to the pain meds she's been getting intravenously, so, no more contrast.  The plan is to get the CT scan, then she's going to be admitted for the night.  They're arguing amongst themselves on whether she should go to the oncology ward or ICU, but I think she's going to wind up in ICU.  Also, her white blood cells count was at an astoundingly high 34, indicating either and infection or something else just as serious.  As a reference, even after the Nuelasta, which stimulates white blood cell growth, her WBC count rarely goes above 12.  So, we don't know what's happening.  At the moment, she's pretty dopey from the pain meds.  Her pain has gone down some, so at least there's that.  I'll post more tomorrow when we know something.

-Chris