Background Info

It's been said that I am not an open book. I can live with that. But don't be surprised that I now have a blog. The purpose is to give everyone a place to get the latest on Marye's condition. Also, this way I won't have to make numerous calls to all of Marye's fans to keep everyone updated (she has a lot of fans). Having said that, I'm more than happy to talk to her fans and give any additional information or answer questions to anyone. I just prefer to do that via private phone calls or emails, which is why I'm using this and not a Facebook group.

I'll start by giving the background of what's happened since July 30, 2011, then start with daily updates. Start at the bottom for the whole story.

I will try to update this page every day as often as possible with her treatment and status. As I get more familiar with the features, I'll add links and email features, etc. Thanks.

-Chris

Wednesday, November 30, 2011

548!

Hey kids, I thought I'd give you the update since we got the tumor marker numbers yesterday.  If you recall, the original markers were at 1480 or so.  The last time they were taken, the number went down to about 950.  That was after two or three rounds of chemo.  Remember that last week the CT scan showed that the large tumor had shrunk, but there was growth in to small lesions, so Dr. Riley wanted to hold judgement on what the new tumor markers showed.  Well, she called yesterday and the number is down to 548, so that is definately good news.  The markers are down by almost two-thirds of their original number and the tumor has shrunk.  As for the two small lesions, Dr. Riley wants to go another round of chemo and take another CT scan to keep an eye on them and to confirm that the large tumor continues to shrink.  Also, while this is good news, remember that a heatlhy tumor marker number is below 30.  So, she's still got a long way to go, but it's moving in the right direction.

In other news, we had a nice Thanksgiving.  Marye's steroids were in full swing the day before and she did a bunch of pre-cooking.  On Thursday, the steroids wore off, but I did the turkey and it came out great.  Then I gave her the Neulasta shot and everything went to hell after that.  The same complaints as before: bone pain and fatigue, although it's starting to wear off now, slowly.  Also, she had an ERCP on Monday and Dr. Vitale removed the two stents and replaced them with one.  He said her bile duct looks much more open than it's been, and he considered leaving them out.  But he figured, it doesn't hurt to have it in there, and with the progress from the chemo, he decided to leave it in through the holidays so she doesn't get sick.  He'll reevaluate in January.

Other than that, things are quiet with her.  She is moving around some, but still has a lot of pain.  I actually got her to take an Oxycodone yesterday.  I think she's taken less than five since this whole thing started.  She has an amzaing tolerance for pain.  Her next chemo is Dec. 15th, then we'll have a better idea of when the CT scan will be.  I'll keep you all posted, but it will probably be fairly quiet until then.

-Chris

Tuesday, November 22, 2011

Mixed Results

So, the blog's been very quiet lately.  Basically, things have been going pretty well.  Marye's been feeling good, although she is still very tired all the time.  But she got her CT scan on Friday and we were anxiously awaiting the results to see if the tumor in her liver was responding to the chemo.  Remember, that her last tumor marker numbers were still very high, but were moving in the right direction. 

Anyway, today was her chemotherapy, since Thursday is a holiday.  So, Dr. Riley came in with the CT scan report, and it's mixed.  The main tumor has indeed responded well to the chemo.  The last CT scan showed the tumor to be 6.7cm x 6.2 cm- about the size of a plum.  The report we got today shows the tumor decreased in size to 5.6cm x 5 cm.  That's good.  But there was more.  Previous scans showed at least two small lesions that were too small to biopsy, but they were measurable: 6mm and 9.5mm.  The bad news is that these lesions have increased to 14mm and 15mm, respectively.

What does this mean?  Well, we need to see the tumor marker numbers that were taken today.  If they stabilize or even increase, then the doctor will want to see another CT scan or MRI in a month to keep an eye on these lesions.  She will also probably look at changing the chemo to another drug.  If the markers continue going down, then she'll probably wait two months for a scan and keep on the same chemo drug.  It's possible that the two small lesions are not cancer, but cysts or any number of irregularities in the liver.  But, given Marye's history, the report says they're consistent with metastatic breast cancer.

I asked a bunch of questions about if it could be a different type of cancer, and Dr. Riley says it's very unlikely.  It's also possible for two separate tumors of the same type of cancer to react differently to chemo.  Remember, cancer is cancer because of an irregularity in the genome that doesn't let the cells stop reproducing.  So, the bottom line is, it's unpredictable.  If the tumor markers go up and/or the two lesions keep growing, then it's only a matter of time before the large tumor stops responding to the chemo, so it's time to change it.  To keep it in perspective, the doctor stressed that these are very small-- perhaps a hundred times smaller than the main tumor-- and as long as the big tumor keeps shrinking, Marye will not have the bad side-effects that she's experienced in her biliary tract.  But it's a sobering reminder that Marye still has cancer, and might never be cancer free, even if we keep attacking it and shrinking it.  Again, the goal is to let her feel better and have a long and fruitful life.

So, that's it.  When we get the tumor marker numbers, I'll post again.  Some other good news is that her blood work continues to look good.  Her white blood cells are good, her bilirubin is down (so the stent is still working), and her liver functions are good.  In the meantime, she got her chemo today and is feeling ok.  She's not nauseas, and I'll wait until Thursday to giver her the Neulasta shot, so she can enjoy Thanksgiving.  Also, she's going to see Dr. Vitale on Monday to get the stent removed/replaced.  Marye's hoping that she won't need a stent anymore, so she can drive again and maybe even get some exercise.

I hope you all have a nice Thanksgiving and you can expect to hear from us again next week.

-Chris

Saturday, November 5, 2011

Third Chemo... doing well

Hey kids, as I prepared to write this post, I reviewed some of the past ones and I have to say that it feels really good to finally have some good news.  Seriously, there were about two months there that I had absolutely NO good news whatsoever.  And since Marye's been feeling better lately, incrementally, reading those earlier posts reminds me of how bad things looked and how much has changed lately.

Ok, on to the update...  Marye had her third chemo treatment yesterday (Thursday).  Like the last one, she took steroids beforehand.  These were NPO (oral), vice the IV ones three weeks ago.  In any event, as we were sitting in the waiting room at the clinic yesterday, they kicked in, and Marye turned into a Chatty Kathy.  I have had very little exposure to steroids in my life, but apparently there really is something to them.  She wasn't lifting weights or running a four-minute mile, mind you.  But there is a marked increase in her energy level when she takes them.  Anyway, they took her blood, and everything looks great.  Her white blood cell count is good, her red blood cell count is good.  Hemoglobin, bilirubin, potassium: all good.  But the biggest news was her tumor markers were way down.  Last month, her CA 27.29 levels were around 1480.  The doctor says that they're happy if the marker levels go down by 100 each month.  But on Thursday, Marye's markers were down to 946.  That's about a third.  So, remember, she's been taking chemo and we've been waiting to see if it's been effective on the cancer tumor.  Since the CT scan usually follows the tumor markers, we're expecting a big improvement in the size of the tumor.

Supporting this hope is the fact that Marye is experiencing a lot less nausea and fatigue, although that is still a major issue.  I guess the best way to describe it is to understand that the fatigue that you and I feel as healthy people is not the same as a cancer patient.  Their fatigue is deep-seeded and profound.  When a chemo recipient gets tired, it's like hitting a brick wall and there is just no coming back until the next day, at best.  We can be walking through a grocery store, and I will literally see her start to slow down and her mind gets foggy.  It's then that I know that she's done for the day and I will park her on a bench while I finish shopping.  However, she's been doing a lot of laundry and other household duties, which makes her tired most evenings, even if we don't go out.  Sometimes, when she's all spun up on the steroids, I think of taking her out to some stores to walk her around and wear her out, like you might take your dog to the park and throw a ball for an hour or so.

In any event, Dr. Riley was thrilled to see her yesterday and I'm happy to realize that she's looking much better than she was a month ago.  So the CT scan is on the 17th of November.  After that we'll know for sure if the chemo is working on the tumor.  Her next chemo is on the 22nd of November, the Tuesday before Thanksgiving.  At least she'll be able to eat, even if she can't do much cooking.  One negative side-effect she's having is the pain from the Neulasta shots that I give her after the chemo.  If it weren't for that, the chemo would almost not be a negative experience, at all.  But she takes Tylenol, and that seems to help.  I'll post an update on that sometime next week. 

The only other prolem she's having is some is some neuropathy, meaning her hands and feet are feeling a little numb and tingly.  I've heard of this before, but I underestimated how bad it can me.  Well, apparently it can turn into a pretty serious condion.  The doctor told her to take some B-6 to counteract it, so we'll see how it works.  Anyway, in short, Marye is feeling much better than she has in the past few months.  The chemo is not kicking her ass like it could, and her blood tests are all indicating that she's doing well.  The CT scan on the 17th should confirm that, and, of course, I'll let you all know.

Thursday, October 20, 2011

Gilda's Club

Hi folks, it's been nearly a week since I've posted, so I figured I'd give you all an update.  Well, since the last post, the steroids Marye had from her last chemo had worn off.  They wore off after about 1 1/2 days, actually, so her fatigue issues continue.  Also, I gave her a Neulasta shot after the chemo to keep her white blood cell count up.  So, while it looks like she's not susceptible to infection, the marrow in her long bones are definately working overtime.  It's like the growing pains you feel during puberty when your bones just ache.  Nothing a little oxycodone can't overcome, but that just adds to her fatigue.  At her request, I did a search to see if there was anything to be learned about chemo and fatigue, but there was just a lot of stuff about eating well and conserving energy.  Not bad advice, but nothing that we haven't been doing already.  So it just looks like this is something that she's going to have to deal with for the time being.

Ok, on Tuesday we went and took a tour of Gilda's Club in Louisville.  The club was created in honor of Gilda Radner by her husband, Gene Wilder, and Gilda's therapist, and has over 20 houses around the country.  Gilda died of ovarian cancer in 1989 (I think) and the club exists to give a support network and place to hang out for cancer patients and family members/friends.  I have to say that I was very impressed.  Marye, of course, is looking like a proper cancer patient (with the bald head/bandana) so she got lots of friendly attention at Gilda's.  But everyone we ran into was extremely friendly and welcoming to me, as well.  The club, itself, is beautiful.  It looks very residential, with a lot of living rooms; the furniture and artwork are all donated by various groups/companies.  They have a huge kitchen that would be suitable for any Food Channel show, with 5 ovens and a big gas stove top in a big island.  They also have lots of support groups, wellness activities (yoga, etc.), art activities, and a big dinner every Tuesday night.  I'm hoping to get Marye to the knitting group on Thursday night, and I might check out the "family/caretaker" group.  Anyway, it seems like a very nice organization and if you get the chance to visit one, I strongly recommend it.  Also, they operate solely from donations from the community, so if you're looking for a good cause, I would say that this qualifies.  More to follow as we get more involved.

Ok, that's about it for now.  Marye has her nadir blood work this Friday, then she's off for two weeks until her next chemo on Nov. 3.  So the blog should be fairly quiet until then.  I'll post the results of her blood work this week; but, otherwise, it's all fatigue, fatigue, fatigue.  <sigh>

-Chris

Friday, October 14, 2011

Chemo, round 2: A new day

Ok, lots to talk about today.  Yesterday, we went down to Brown Cancer Center in Louisville for Marye's next chemo treatment.  We had a consultation with Dr. Riley while they took a blood sample to make sure Marye was able to handle the chemo.  So, we really wanted to talk a lot about side-effects, especially the fatigue that Marye's been suffering for so long.  For weeks, she's done nothing but move from the bed to the couch, she would get winded just walking into the kitchen, and she didn't have the energy to climb the stairs.  Well, something that Dr. Riley is especially concerned with is how her patients feel.  So, we talked about switching to another chemo drug, and possibly going to a lower dose but taking it weekly.  That didn't sound like fun, so Marye said she just wanted to stay on the 3-weekly schedule.

Dr. Riley wanted to switch to Taxol, which is very similar to the Abraxane, in that they're both paclitaxel, but the drug is suspended in a different solvent.  That solvent is so toxic, in fact, that patients need to take a steroid and antihistimine prior to chemo to prevent allergic reactions.  Also, the Taxol needs to be infused over 3 hours, instead of the 30 minutes for the Abraxane.  I don't understand how this could be better than Abraxane, but ok, I'm not the oncologist.  By now the blood work came back, and everything looked great.  Marye's liver function is good, her bilirubin is low, and all her other numbers are fine.

So we go to the chemo lounge and they start with the Benadryl (antihistimine) and the steroid, dexamethasone.  Then she goes to sleep for three hours while I go get something to eat and roam around Louisville.  Fast forward to the end, and we drive home, but not before we had to run a few errands and even stopped to get something to eat.  Marye ate some baked ravioli and garlic bread, and was doing very well, albeit a litlle wobbly.  When we got home, she was a little tired, but had no nausea or other issues.  We started to hold out some cautious hope that she wouldn't get knocked on her keister like she has been.

Well, this morning, if Marye wasn't as bald as an old man, you would never have known she had cancer, let alone had chemotherapy less than a day ago.  She did laundry, sorted her clothes, put some books away, made a shopping list, and even called the doctor's office to tell them how great she felt.  She was up and down the stairs and everything.  I canceled the order for the stair-climber I was going to have installed.  Seriously, she looked great and hadn't had a day like this since July 29.  She wanted to visit some of her favorite stores that she hadn't been to in months, so I spent all day driving her around.  Good stuff.

Anyway, around 3:00 she started to get worn down, and is now in her usual position on the couch, but she's not sick at all.  So, I have to attribute her energy to the steroids, and that's ok.  Maybe she should be on them every day.  In any event, we don't know how long she'll have this much energy; it's possible that it will wear off and the chemo drugs will start to have their usual effect.  But we're hopeful.  Either way, that fact that she felt great today and isn't sick at all made it all worth it.  Even if she loses her energy again, I'll be happy if she doesn't have the nausea.  Ok, in addition to the steroids we picked up for her next treatment (in three weeks), I got a Neulasta syringe that I used to inject her today.  This is similar to the Neupogen that I gave her last time, but it's only one shot instead of five.  She had Neulasta in 2005 and is aware of the effects-- bone pain as it stimulates the bone marrow to grow white blood cells.  So, she'll probably be kind of laid up for the next week while that goes on, and we have some pain pills to help her there.

Moving forward, barring any catastrophes (infection, etc.), she's got nothing to do until a blood draw on her nadir next Friday, then chemo on November 3rd.  I've already got her dexamethasone (pills) for that treatment, so we're good to go.  Dr. Riley says they want to do a CT scan after two months of treatment to check progress on the tumor, so that should be after next chemo.  Down the road, we're anticipating that Dr. Vitale (remember him?) will need to change the stents in her bile duct OOA November 21.

Other than that, we're looking forward to some quiet time here.  I'll post every few days to update everyone on her condition, or if there are any developments, but I'm hoping there won't be.  Ha!

-Chris

Wednesday, October 5, 2011

Bald

So, Marye had her first chemo treatment less than two weeks ago, but this weekend, we noticed that her hair was coming out in pretty big clumps.  Well, she didn't want to shave her head until she had some caps to wear, and they're all in Nashville.  So we went down to the Brown Cancer Center Resource Center today and picked up a few things for her to wear on her head.

She got some nice things that will keep her head warm and are pretty stylish.  So, when we got home, it was time to shave her head.

Marye's Ponytail

Well, that's it for today.  She still is very fatigued, and has a constant low-grade nausea, but she's hanging in there.  Her next chemo treatment is next Thursday, so it should be fairly quiet until then.  I want to say "thank you" to all of her fans who have sent cards and emails to Marye with well-wishes.  She does appreciate them and it helps to know that she is loved.

-Chris

Friday, September 30, 2011

Bloodwork

Today was Marye's nadir-- meaning halfway between chemo treatments-- so we went down for some bloodwork to see how things are going.  Well, it seems that the neupogen injections are working, since her white blood cell count was up over 12 (from 1.1 on Tuesday).  Also, her hemaglobin was better, so the transfusion helped, as well.  She still doesn't have much energy, but it has been somewhat better lately.

Also, I forgot to mention in the last post that she got a prescription for marinol this week.  So she's been taking that, and it's having some good effects.  Meaning, it seems to help with the nausea most- if not all- of the time.  Well, she's been up a little bit more than ususal, so that's a good thing.

There is not much going on until the 13th of October, which is her next chemo treatment.  I don't expect that I'll be posting much until then, but I will post a few times to let you all know how she's feeling.

Hope everyone has a good weekend.  I may play some golf on Saturday.

-Chris