Final Entry......

Where do I start? What do I write? How do I explain this?

As I sit here, I have written and deleted many words, to many to count. I thought about Lisa and how she would want this handled. First she would tell me  to "get my own blog", this is hers! Then I think she would want you to know what happened and how we will carry on. So here we go.

"Hey, let's sit on the couch and talk about mommy". That's how the conversation started. It seemed like we were crying together just seconds later. Holding each other, helping each other in a way that only we can. It was the most private of moments in my life that I will ever only share with a few people and I will leave it at that.

What you need to know now is, Katherine is an amazing child and we know who is responsible for that. She had and has her moments but is strong and caring and she knows mommy is ok now. She isn't sick anymore and she is all around us (Katherine's words).

On Wednesday night Lisa left us. She never shyed away from sharing what was happening medically so neither will I. 

The cancer had moved into her lungs. It had spread to the point of causing the lungs to put pressure on the heart. It was that beautiful heart that failed her that sad night in the hospital. 

It will also be that heart of hers that we remember. She was able to hold all of us in it and still had room to give. We know she was fiercely loyal to her friends and family and I have felt that love in return these last days. Know that the amazing response has been overwhelming.

I imagine she is rolling her eyes at me rite now and coming up with a snarky comment about all this. But I have your phone now Lisa so I'm in charge!

This will be the final post on this blog. That does not mean it's the final chapter. We will all continue on, we must. Lisa would be pissed if we didn't to be honest. We will continue together as a stronger community. That will be one of her legacies. She will bring people closer and put our lives is perspective.

Lisa words from her first blog entry:

" I'm so overwhelmed by the love and support everyone has given, and I am often brought to tears reading your texts, emails, posts, etc.  I am so very lucky to have the family and friends I do.  It is during hard times when you come to appreciate what you have in life.  I have so much.  So very much."

-Lisa Cochran Delaney

So this sucks...

Yeah I don't have a catchy title for this one. This is the best way I can put it. On Sunday night, I went to the ER because of extreme shortness of breath. I was admitted and given oxygen, which of course helped. Two days and many tests later and it seems everyone agrees this is probably inflammation from the treatment, which is a side effect. With my already inflamed lungs, the treatment sent me right over the edge. So I'm home now but still need supplemental oxygen. I think my breathing is improving VERY slowly each day and I'm hoping the further from treatment I get, the more it improves. I'll be making follow up appointments with my Fox Chase docs soon. 

That's all I have for now. A minor setback, I hope, until the treatment starts working. Until I know for sure what's up, though, I'll be canceling any plans. I know a lot of you wanted to get together, but please understand when I say no for now. Lugging around oxygen tanks isn't fun. Just talking is straining. I'll keep you posted. 

Xo, Lisa

Happy New Year!

I hope you all had a great holiday season!  It was hectic here in the Delaney house.  We had something to do pretty much every day, and it took its toll on Kat.  She missed her first day back to school with a fever.  We all seem to have colds in the house, but Kat got it the worst.  Of course she's hopping up and down now and I'm going nuts with her in the house another day.  She'll be good to go back tomorrow for sure.  Thank God.  Many of her friends seem to have been bitten as well, so we're hoping for a speedy recovery for all!

So what's new?  Well, in the treatment world, what did I last leave you with? Ah yes, we were doing one more treatment and then seeing if it made a difference in the lungs.  Well, it did not.  My lungs have gotten progressively worse since I last blogged.  I went in for a tap and was told there wasn't enough fluid to tap, yet I still can't breathe well.  My doc called me in the next day and we agreed the lung issues are probably related to the cancer, which has taken root in my lymph vessels in my lungs. Since the surgery stopped the fluid accumulation, it has nowhere else to go. A backfire no one saw coming. Of course this is all speculation, since the only way to verify is through a biopsy, and no one sees the need for that.  We all know I have cancer.  So my doc called a pulmonary oncologist I had seen months ago to consult, and he recommended a lung capacity test and a trip to the cardiologist to make sure my heart is ok.  Two days and several tests later, my lung capacity is greatly reduced (I saw 40% on one sheet but I have to admit, I didn't get a good look at the results entirely, so that might just be for one test) and my heart is healthy except it is working extra hard to try and pump blood into the lungs, which are being blocked by the cancer.  Stupid cancer.  It's a combination of all those things that is causing my shortness of breath.  Oh, and a distended belly, which no one can give me a solid answer for.  The cardiologist said it's probably related to the heart.  It's a good look. Comfortable too.

So Dr. Haber, the pulmonary doc, increased my steroids to see if it would help.  It has not.  It has just made me puffy, which again, is a good look.  I saw him again last Friday and he said I could taper off the roids, since there is no point to them if they aren't doing anything.  I had already started doing that (shhhh), but I think I'm going to hold firm at the dose I am until after treatment on Wednesday.

Ah yes, treatment.  So I spoke with Dr. Dotan last week and the results of the biological testing came in.  Turns out my tumor (and in my case tumor means cancer cells floating around, not necessarily a lump) looks like it'll respond to a HER2+ drug called T-DM1, brand name Kadcyla, even though the tumor isn't HER2+.  I'm anxious to see the rest of the report, but anyway, it's another treatment option and we've decided to give it a go before a clinical trial, since the trial is a toxicity trial and Kadcyla is a standard treatment.  I have high hopes for this drug.  I've read up on it and it seems to work really, really well in some people.  Up to 3 years in some.  That would be a God-send, but really, I'd like to get just as long as possible out of it.  To have it work for a while and get rid of these lung issues would be amazing.  You have no idea what it is like not to be able to breathe well until you can't. Lung infections just don't compare. Of course, when you feel fine in every other way, it's that much more frustrating.  Stupid cancer.

Ok, so one final thing.  I embarked on a 2 week raw food diet today, but I think I'm changing it already.  I've done a lot of research on raw foods and you have to do more than fruits and veggies. You have to do nuts, seeds, oats, etc., to feel full.  Those latter things bring about a risk of bacteria that I didn't really think of when I decided to do this, so I think I'm going to modify it to a few days raw followed by the remaining 2 weeks vegan.  Then I'll ease into a whole foods dietary approach. No dairy, limited meats, non-processed foods.  The goal is to stop depending on so many processed foods and start eating real, as Mother Nature intended it, food.  No dairy though.  I just feel better without it. I also understand that I'm only human and I will slip up occasionally.  That's ok.  The point is to be healthy.  One slip up here and there is not going to hurt (as long as it's here and there!).

So if I seem a bit grumpy the next few days, please forgive me.  I did some serious binge eating over the holidays and I need a big-time sugar detox.  I'm heavily addicted.  It's sad.  Right now I'm trying to figure out how to get chocolate into my diet without sacrificing the raw aspect.  I have no cacao. It's a problem.  I've put bananas into the freezer so I can make banana whips tonight, and I'm thinking of juicing some pineapple to try and recreate a Dole Whip (Google it).  It's seriously that bad. Although really, Dole Whips.  Yum.

Ok, I'm out of here before I go off on a tangent.  I'll keep you all posted on the treatment, per usual.

Happy 2015 to all!

xo, Lisa

An Army of One, an Army of Many

It is often during the most challenging times that something happens to remind you that there is hope and strength when you need it.  Such a time presented itself to me this week when I was sitting in the infusion room after a long 3 hour wait to to get there.  The scheduling and pager system had been on the fritz at Fox Chase all day and by noon, the wait to get a chair was over three hours.  My appointment was 12:15.  I got in at 3:30.  Super fun.  While it was annoying to have to wait, my dad takes me to treatment, so I had someone to talk to and I didn't mind so much.  Time passed.  I would've rather been anywhere else, almost, but at least I felt OK and was in good enough spirits to enjoy a conversation with someone.  It has not always been that way during treatment.

Much to my surprise, about 30 minutes in the chair, a doctor came over to me with a big, gift-wrapped bag labeled "Lisa's Army." Having not heard of this before, I saw the bag and said, "Uh-oh, what did I do?" In jest, of course.  All in jest.  Dr. Jain, the doctor standing before me, explained that I had been nominated by my doctor, Dr. Dotan, to receive a comfort kit from Lisa's Army (lisasarmy.org), which is an organization founded by the family of Lisa Loonstyn-Golden, who passed away at 24 from ovarian cancer, to bring comfort and care to patients fighting cancer.  The honor of receiving such a gift was overwhelming.  To be nominated by my amazing doctor in itself is a gift.  The bag contained all the comfort items you could want - a blanket, hat, tissues, nausea pops, chap stick, lotion, etc. - clearly Lisa understood chemo.  But it also contained an iPad.  An iPad.  So that three hours wait? Boy don't I feel silly now.  It all comes around, doesn't it?  Consider me one of Lisa's Army now. What an amazing gift to get.

As for the cancer front, here is what's new:

Last week I had a CT and while the news wasn't bad, it wasn't everything I was hoping for either, although I could sense that going in.  No obvious progression.  The mets on the spine have been stable since October, which is good, and there is no new tumor growth.  However, the surgery wasn't a screaming success.  My lungs have three pockets of fluid in them, two which seem to be growing from either side of me where the chest tube incisions were made.  These balloon-type pockets (think of a long balloon, not a round one), are sitting right, smack in the middle of my lungs.  One in each lung.  The one in the left lung is right behind my heart, causing extra issues with breathing.  Not what I wanted as an outcome.  Less overall fluid, but in the worst possible spot, so the side effects are worse.  I'm not being tapped anymore on a weekly basis, but I also cannot walk up a flight of 6 stairs without getting very winded.

So the plan is this - one more treatment (that was Monday) this month and then, at my next appointment with Dr. Dotan, we assess the lungs.  If the lungs are even slightly better, we continue with this treatment. If they are not, and I honestly don't think they will be since I've been on this for a while with continued fluid build up, we get me signed up for a clinical trial we've had waiting.  Dr. Dotan and I both feel that if the treatment now was truly working, the fluid in the lungs wouldn't have built back up after surgery.  I've had three treatments since surgery and we should've seen a difference by now.  But we'll assess again on New Years Eve day.  Happy New Year!  On the bright side, we now have this new drug I mentioned last time from Eli Lilly for gastric cancer that is a standard therapy.  If the clinical trial doesn't work for me, we have that in our pockets.  Always something down the road.  That's the goal.  Keep it chronic.  A little less annoying would be nice, though.  Not gonna lie.

So that's it for me.  Have a wonderful, beautiful, precious holiday season with yours and remember what this time of year is all about.  (Hint: it's not presents!)

xo,
Lisa

Bring on the festivities!

So I realize I say this a lot these days, but wow, has it been a while!  I thought I would have an update sooner for you but the month of October was pretty much one I'd like to just glaze over.  Actually, between the surgery and the drugs, I pretty much did!

The Delaney trio went to Disney and Universal Studios the last week in September and, while it was a good vacation, it was hard for me.  The cancer wasn't a problem, but the lymphedema proved challenging this time around.  My feet took a beating and so walking around became difficult.  All in all a good time, but the last one for a while.  The next vacation will involve a lot of sitting.  Preferably on the beach.  Sean and Kat can figure out something else to do while I tan it up.

Our return from vacation marked a month of trials for me.  The day after we got back I went in to Fox Chase for a biopsy of my spine, then two days later I had treatment, then three days after that I went in for a lung surgery called pleurodesis.  The surgery involves inserting a chest tube, in my case in both pleura (the lining surrounding the lungs), and then draining the fluid in there and inserting a talc powder to irritate the pleura lining so they adhere.  The chest tubes are left in for 48 hours to make sure all fluid is drained, and then you're sent home with a lot of drugs.  If successful, the pleura seals so that no fluid ever builds up again.  There is no downside, other than it being a major surgery, in sealing the pleura.  The fluid doesn't go anywhere else.  It just doesn't develop.  I'm sure there is some limit to the lung capacity after the fact, but it is so minimal that, in people who choose the procedure for valid reasons, it isn't even noticeable.  So my surgery was mostly successful as far as the lungs go.  The left pleura seems to have completely sealed.  The right pleura has two pockets of fluid that don't seem to be sealing completely.  The amount of fluid in there is minimal compared to the two liters a week I was having drained prior to surgery, but it's frustrating having it there at all.  At some point it may need to be drained, but then, it may not.  Hard to tell. 

The biggest problem from surgery was that my breathing was getting worse, not better, as I came home to recover.  Long story short, after two follow ups with the pulmonary oncologist, it was found that I had fluid around my heart caused by, we believe, inflammation from a reaction to the talc.  So here's the kicker - the surgery is supposed to induce inflammation so the pleura linings adhere, and treating the heart with steroids or NSAIDs would reduce that inflammation, so I went 4 weeks with this trouble before my doc, my own oncologist, called me and said, "Enough is enough, I'm calling in a steroid."  I love her.  It had been 4 weeks and if the surgery hadn't worked by then, chances are it wasn't going to.  Too much fluid had built up in the pleura at that point for it to seal.  I don't think the pulmonary doc was thrilled, but I didn't care.  I couldn't walk up a flight of stairs.  I couldn't pick Katherine up from the bus stop.  I couldn't walk 50 feet without needing a break.  After one dose of the steroid, I was able to walk around with Kat on Halloween and go trick-or-treating.  After the weekend, I was walking up the 3 flights of stairs from my living room to my bedroom without needing to stop.  It has been a week and a half and, while I'm still short of breath and can feel the pain around my heart indicating there is still fluid there, it is so much better than it was before.  I have another week and a half on the steroid and I'm hoping the treatment I have scheduled this Friday doesn't make the fluid worse, as it did in October when I had my last treatment.  If the steroid doesn't take care of the fluid completely, I either live with it (as long as it's not putting pressure on my heart) or I go in to get it drained, which is not a fun thing.  I don't want another hospital visit.  I don't want another incision and I don't want someone sticking a catheter into the lining of my heart.  I don't care how much experience they have doing it.

So now that I'm doing much better, we're back on the treatment track, although a modified schedule both so I can continue to recover and make it through the holidays while enjoying myself.  I have treatment Friday and then not again until the first week of December, when I'll also have my next CT.  At that point we can determine if this treatment is really working and make a plan from there.  My biopsy results on the spine showed nothing new, and the point of them, which was to get biological testing through Memorial Sloan-Kettering, proved invalid.  Turns out they can't do biological testing on bone.  Sigh.  We're still waiting on the results to see if the bone mets are HER2 +.  If so, I would go back on Herceptin in addition to the chemo I'm on now, and potentially tackle everything at once.  I'm almost hoping for it, since it will give me an actual treatment option that will cover everything going on with the cancer.  It would explain why the bone mets grew as the skin lesions regressed.  As I recover from the surgery, the frustration of the cancer itself grows, as I still feel like it's a chronic condition rather than a death sentence, being able to go and live life fairly normally.  Having said that, this is potentially my last treatment option before we start grasping at straws, so let's hope it's working.

So because Memorial has nothing for me and Penn doesn't seem to have anything for me, we're expanding our options.  I'm going to reach out to Johns Hopkins to get on their radar, and I'm in the process of sending everything to the National Cancer Institute (NCI), who handles many of the clinical trials in the country.  Both are based in MD, so not too far if I get into a trial or treatment plan there, and really, where is too far when you're talking about life?  So between the holidays and getting in to those centers, it'll be a busy couple of months.

Two things came up over the past month or so to keep an eye on, though.  One is the FDA approval of the Eli Lilly drug, Cyramza, which is the first FDA approved drug for gastric cancer in AGES and the first approved treatment of it's kind (second line), ever.  The second is the Merck trial results for their immunotherapy drug, Keytruda, showed promise in gastric cancer patients so much that they are moving ahead to Phase II in early 2015.  Now I don't qualify for Phase II trials since my cancer is not specific, but that doesn't mean this drug won't show so much promise that it'll be standard in another year, and that's the goal, right?  More treatment options.  These are two more potential options we didn't have 6 months ago, and that's good.  Stomach cancer is not as prevalent in the US as in Europe and, especially Asia, but it is the fifth most common cancer in the world and the third-leading cause of cancer death.  Like pancreatic cancer, gastric cancer is most often not found until it has spread, which is why it is so deadly.  We need treatment options for metastatic cancer, and these two options show promise.  Fingers crossed.

I think that's it for now.  Have a fantastic holiday season and I'll update when something new comes along.

xo,
Lisa

Back in the fight

So I was debating on waiting to share this information until I had the full picture, but I decided to let you know what I know and then update you as I find out more.  I saw my doc yesterday for the results of my latest CT and the news kind of sucks, to be honest.  I now have several lesions on my spine.  And by several I mean, like, at least 5 or so.  I had one for a long time that showed resolved a few months ago.  My doc showed me side by side of my June scan with this latest, and it's clear.  They weren't there in June that we could see.  Now I'll share with you what we discussed.

My doc told me that bone mets (that's what we in the know call metastases, or cancer that has spread from the original site, which is pretty much ALL of my cancer, you know,  having no idea where it came from and all) are hard to gauge because sometimes it takes a bit to spot them on a scan.  She said they may have been there for months, but we just now see them on the scan.  So there is a possibility that they were there before I went on my current treatment, which was end of June.  She also said bone mets can grow and stay for a long time, or they can grow and grow.  We'll just have to wait and see.

We discussed next steps, including a clinical trial that I've now been approved for at Fox Chase.  My doc got me approved before even letting me know about it, because she's awesome that way.  On Monday, I found out from my doc at Penn that I would not qualify for the immunotherapy trial there, and was basically told it would be hard to get into any trial having an unknown primary.  So Monday was not a good day.  It's not easy hearing that, because they can't figure out where your cancer originated, you're pretty much going to be left out of possible life saving treatment.  So while Wednesday did not bring good news, it did bring hope, which is what every cancer fighter needs to thrive.  The clinical trial I've been approved for is a Phase I trial determining the safety of a hedgehog pathway blocker.  Yes, hedgehog.  Seriously.  They can't come up with a better name?  Hedgehog.  Anyhoo, I did some research and it turns out this type of treatment has shown to be quite successful in certain cancers, such as basal cell carcinomas, but not very successful in most.  Very few side effects, though, so there's that.

My other option is to stay on my current treatment since, from visual clues, it seems to be working.  The rash on my torso is almost completely gone and my lymphedema in my legs seems to be going down ever so slightly.  I'm now able to wear lower compression thigh high stockings on most days instead of highest compression full stockings, which is awesome.  On days with a lot of walking, I'll need to wear my custom stockings, but it's nice not to feel like a pig in a blanket once in a while, especially since the full stockings push the fluid up to my abdomen and then I just feel horribly bloated and fat, not to mention uncomfortable.  And funny looking, being the upper abdomen is all flabby and bloated and the lower abdomen is all flat.  Stupid lymphedema.

So I chose plan B.  I'm going to stay on my current treatment for another 2 rounds and then have another scan to see if things have changed.  (BTW, these mets were the only issue on the scan, other than the effusions in my lungs, which we already knew, obviously.) In a few weeks, after vacation, I will have a biopsy done on the bone to see if we can get a good sample for further genetic testing.  Hopefully there will be enough tissue from this biopsy that they can get a good sample and find out if there are any genetic mutations in the cancer.  If so, that potentially opens up more clinical trials to me that are based on mutation instead of cancer type.  So fingers crossed for that. Before agreeing to it (which I would have done anyway, to be honest), I asked my doc if it would hurt to get the bone biopsy, because I've heard they are incredibly painful, and she didn't answer right away.  Of course, being the ridiculous Disney fan I am, my response was, "You hesitated."  (If you don't know what movie that came from, you either don't have kids or you don't pay attention. Or both.) She laughed and said she didn't know because she'd never had one, but she thought they gave you not just a local anesthesia, but a twilight one as well, so I'm all like, "Done!  Sign me up!"  I'm a huge fan of twilight anesthesia, especially if it's Propofol, since you get the best rest while you're under.  I know, it's the little things.

So that's how my Wednesday was.  It's not the greatest news, but here's the thing, while I would prefer the cancer didn't spread at all, the fact that we have a chance for further testing gives me hope.  The last time I had genetic testing done was over 2 years ago.  A lot has changed in 2 years.  My doc even uses a different company for testing now than she did 2 years ago, so that alone could show different results.  Cancers also change over time, so we could find something different about it now that will allow us to treat it in a manner that would not have worked 2 years ago.  Also, the cancer was already in my bone, so it's not a new spot.  Just new lesions in the same place.  I've said it all along, the goal is to keep it out of my organs.  So far, that has been the case.  I told my doc the plan has always been to keep going until they find better treatment.  I've held up my end of the bargain, so now it's her turn.  As she said, my disease has a survival rate of 6 months.  Over 2 years later, I'm still thriving, and I have no intention of stopping.

So no negativity or sadness in any comments you may leave!  I don't want to hear it!  Just good thoughts and prayers and juju and anything else you want to throw at me!! And remember to take care of yourselves, have fun, enjoy life, and increase the amount of love in your lives.  It's so short and so fragile, you don't want to regret anything.

xo, Lisa

Side note - We are going on vacation in a bit to Florida and I know some of you live in the area and were hoping to get together at some point.  I'm going to be a party pooper a bit and make this vacation completely about the three of us.  We're not there long and we have a lot planned between Disney and Universal and I want to make this vacation just for us without worrying about meet times or schedules.  I hope you all understand. I'll catch you  next time!!

"A couple right hooks, a few left jabs...."

Wow, has it really been two months since I last wrote here? Time flies! My lack of writing usually means I either am too busy to write or I don't have much to write about.  Neither is necessarily good nor bad, but I do appreciate the ongoing support I have been getting from all of you in spite of my silence.  You've been with me this entire time and you're in for a well deserved update!

In early July I went back out on disability.  The treatment I'm on is every two weeks and it just got to be too much for me to continue to work while going through it.  I miss work.  I like the company I work for and the people I work with, not to mention being a contributing member of society, and it was really hard making the decision to go out.  Right now my leave is indefinite, and I truly have no idea when I will be able to return, if I will be able to return.  My good weeks are ok now, but I don't have as many good days as I used to, and it's entirely because of this treatment schedule and the pleural effusions.  So until we get things under control, my leave is indefinite. The treatment seems to be working slowly though, so fingers crossed!!

The pleural effusions (bilateral) continue.  I am at Fox Chase at least once a week now getting a thoracentesis on either the left or right lung. (That's a tap, for those wondering.  You get good at medical terms when you're at the docs all the time!)  The fluid doesn't seem to be accumulating as quickly now, but I did have a liter drained from my right lung on Monday after having it done just a week prior.  It has been 3 weeks since the left lung was drained and that's great news because it means it's not accumulating as quickly.  My right side has always been the bad side though, for some reason, with everything.  I have a thora scheduled for Friday for the left side after treatment.  I am getting tired of them.  They are painful.  First they put a needle in to numb the skin and surface tissue.  Then they go deeper and numb the lining of the lung. That one takes your breath away.  Once the doc didn't wait long enough for the numbing to occur, or she didn't get enough in there, and I felt the catheter go into my lung.  Let me tell you, I've been through childbirth, both the pain of pushing with a little head peeking out, and the pain of a C-section without enough sedative, and I never cried from pain of a medical procedure until that moment.  There are so many nerves in your lungs and it was so painful, I actually make sure to tell them every time I go in now what happened and to take it slow.  They've been good since, thank God. I'm still done with it.  I have an appointment in a few weeks with a thoracic surgeon to talk about next steps.  I'm still up in the air on when and if I will get further treatment, but I need to have the consult so I'm ready when the time comes.

One last piece of medical info before I move on.  There is a clinical trial at Penn that I'm interested in and have asked my doc about.  It's an immunotherapy trial.  I have always been a strong believer that immunotherapy is the right treatment for me and I could be full of crap (you know, with my obvious medical and bio-science experience), but when the cancer loves your immune system, it seems only logical that if you reprogram your immune system to fight the cancer, it is your best chance for remission.  My doc at Fox Chase agrees this is a good trial for me and told me to contact my doc at Penn, which I have.  It often takes a while to get all things dotted and crossed for a clinical trial, so once I know more, I'll let you know, but it may be a while.  I may not qualify, but I'm hoping to God I do, and all juju my way on this one would be greatly appreciated. 

So the title of this post is from my theme song during this fight, by Gym Class Heroes.  There are so many things about this song that I relate to, even though it's not at all about fighting a disease.  When I am down and feeling like I just can't do it, that song brings me back to my fighting weight. 

"And if I can last thirty rounds
There's no reason you should ever have your head down"

Everyone has their own issues, and everyone needs to complain about things that ultimately don't matter in the end, but when I feel like I am complaining about things too much, or I hear people harping on about things that just don't matter, this is what I think of.

"It's gonna take a couple right hooks a few left jabs
for you to recognize you really ain't got it bad"

And it brings me back to center. 

"If you fall pick yourself up off the floor
And when your bones can't take no more
Just remember what you're here for."


Happy 6th birthday, baby girl.

xo, Lisa