New year, new challenges, new resolution

It's freaking coooooold. Where is summer??

Well, my first CT on this regimen didn't go as I'd hoped. While the tumor in my groin is down, a spot on my spine that was previously unclear has grown, and I have fluid in my lungs. At first Dr Dotan was confused about the fluid because there was no fluid of concern in October's scan. But radiology had not submitted their report yet so she was going by what she saw. She scheduled the drain of my lungs to test the fluid and told me to come back after to get the rest of the orders for the next chemo. Then when I saw her next, she had spoken to the radiologist who pointed out a small mark on my spine from October that seems to have grown, indicating it is cancer. Not a huge concern about the bone, but since it is closer to the lungs, she decided I should go back on docetaxol because we know it works. Which means back to wearing wigs! The lungs could very well be from the lymphedema. I've read it often from boards and articles. It's not a great development but obviously that's preferable to it being cancer. Doc was worried about the bone and lungs together enough to change the treatment plan. I'm upset about losing my hair and that I'll have increased side effects, like mouth sores. Ugh. But I'm going hard core cleaning up my diet now to give my immune system the best possible chance to work with the chemo and keep suppressing things. No more growth!!  That's why I went hog wild with the fast food. I had intended on that being my last meal before things got bad, but decided it would be my last meal before things got good!  I'm kicking this body's ass into gear!

So for the record, I'm now on 4 chemo drugs, a drug to strengthen my bones, and 5 preinfusion drugs. Good times. 

It's always hard when you're told the cancer has spread. But like Dr Dotan said, there have been patients who have lived 10 years with bone metastasis. In 5 years I truly believe the treatment of cancer will have changed drastically. There is so much hope in research now. I just need to do what I can to fight it off until something much better comes along. That has always been the goal. They just need to get that immunotherapy approved for gastric cancer!

Just a bump in the road folks. No sense in holding onto anger. It just brings you down when you need to be lifted up!

Xo,

Lisa

P.S. I'll know the results from the lung drain next week. I'll let you know. 

Ending the first cycle, a reflection back, and moving forward.

Well that was a long title!   I'm typing this post on my new iPad (that I WON through the KYW 20 days of Tablets contest, did I mention?). Please excuse any typos I may miss. Also, I'm very tired and still rather loopy from the Ativan, so bare with anything incoherent or rambling. 

Today started my 3rd treatment in the cycle. Before the next one I'll get a CT to assess how things are going. As is normal with the first round, I'm feeling quite anxious right now, so instead of another post explaining how I'm feeling or what it's like leading up to the CT, I thought I'd share some of my dos and  don'ts when dealing with those with cancer. These would probably apply to other chronic diseases, but I'll stick with what I know. 

DO keep in touch. It is very important to maintain old and make new friendships while dealing with such a heavy condition. Laughter truly is the best medicine and good friends know when it's appropriate. Text works best for quick shout outs and setting up lunch or drinks. Sometimes phone calls are hard, but if that's all you got, the phone works too. In person is always best. With some stipulations. 

DON'T be offended if I don't have the energy to reach out first or if it takes me time to get back to you. Life is busy and exhausting on so many more levels than ever imaginable. I go out and see people. I just don't do the planning much anymore. Send me a text or FB me with specific times, and if I can make, I'll be there. 

DO ask questions. I'm more than happy to answer them. I prefer questions over the head tilt + sigh. You know the one. 

DON'T turn away if I want to talk about the cancer or lymph edema or anger or how wrong it is that cancer thrivers even HAVE any other ailment to begin with!!  Be angry with me, or just listen, or offer wine, or distract me. I love distraction. I used to be fun! On the flip side, don't be surprised if I show no interest in talking about it. It goes both ways. Just don't give me that head tilt + sigh. Seriously. 

DO offer help when you think it's needed. Truly needed. We all get to the point where pride takes a back seat and we realize help would be nice. 

DON'T offer help just to make you feel better. I know that sounds harsh, but it's true. Offering to bring a lasagna when you know I can't eat it isn't helping me, and Sean and Kat will never eat that much. Sending over a gift card to a local place that does takeout - yes!  Now you're thinking!  I greatly appreciate everything everyone has done for me, from the slightest gesture to helping make the dream vacation a reality.  Just don't put it on yourself to feel obligated. Some people are just not obvious helpers. Those people have ways to help they don't even realize, often in humor or alcohol. Or both. Choose your path.  

DO show emotion around me. It's fine. This is a hard thing to go through and if you're showing any kind of emotion, I know you care. That's huge support. Laugh, cry, cheer me on, get angry. It's all good and it all gives me strength. On the other hand...

DON'T do either of these: tell me I'll be cured. I won't. I have stage 4 cancer. At best it's a long-life-long chronic battle. I've always said my goal is to keep going until the next great drug comes along. That's still the plan. Also DON'T act as if every piece of info I share about my treatment or the cancer is just awful, merely because it's cancer. When I say the tests showed the cancer is aggressive but can be targeted, focus on the targeted treatment, not that it's aggressive. Aggressive cancers respond well to treatment. It's good!

Finally, DO comment!  I love knowing you're reading and what you think. I'll answer questions, too!

I think that's good for now. I'm up way too late. 

XO,

Lisa

       My view from my chair in the infusion room today. Work and life.

ETA: GD Auto correct apparently doesn't know the diff btw well and we'll. made 2 post publish edits to Lisa-correct them. 

Two down...

...four more to go!  Well, four plus a lifetime. 

Today is disconnect day (yee haw!) and I'm feeling it.  Nauseated, that is.  I'm on less anti-nausea drugs this go-around because the side effects are less on this treatment, but I think I need to bump it up a smidge.  It's not as bad as last time, but I think I can do better on some more drugs.  That's all I need, right?  More drugs.

So a couple of things to update you on since last time.  My doc let me know that, if all goes well, I'll do 6 rounds of treatment with the carboplatin, 5-FU, and Herceptin, then I'll just be on the Herceptin every three weeks forever.  Or until the cancer mutates, at which point we can try other HER2+ treatments.  Because my diagnosis is Unknown Primary (can't definitively diagnose something without a clear pathology report), I'm eligible for drugs not approved for stomach cancer.  Like drugs for HER2+ breast cancer, of which there are 4.  I mean, there is still a chance this is breast cancer.  We just don't know.  Maybe I should drape myself in pink and periwinkle.  Anyway, my doc said she's had patients on Herceptin only treatment for years.  YEARS!!!  Do you know how often the word YEARS is used in the stage 4 cancer world?  I'll tell you.  Not very often!  She almost made me cry.  Dr. Dotan has only ever made me cry happy tears.  For some reason I don't cry sad tears around her, just happy tears.

The second thing to let you know is on Saturday I woke up and the enlarged lymph nodes in my left groin were completely down.  Poof! Gone.  I couldn't believe it!  So this tells me two things:  1 - the treatment is most definitely working, and 2 - the majority of the enlarged nodes are from lymphedema and not cancer.  Both good things!  The lymphedema has so far resolved itself in my left leg, although I will still be mindful of it for a while so it doesn't come back. 

Ok, so I'm going to go vomit, I think.  If only.  It's that awful feeling of wanting to throw up but not being able to.  I don't think it would get rid of the nausea, so it's probably for the best anyway. 

And on that note - Happy holidays to all!  See you in the New Year!

xo,
Lisa

New Info, New Drugs

Today was supposed to be my first full infusion of my second go-round with chemo, but things have changed a bit since I last saw my doc and so I only had part of my infusion today.  What changed?  Well I'll tell you.  Hold your socks. 

After my last biopsy, the pathologists decided to test the tumor for HER2 protein.  What the heck is that, you ask?  Well, I'll Wikirelay it for you:

HER2 "is a protein that in humans is encoded by the ERBB2 gene. HER2 is a member of the epidermal growth factor receptor (EGFR/ErbB) family. Amplification or over-expression of this gene has been shown to play an important role in the development and progression of certain aggressive types of breast cancer. ... Over-expression is also known to occur in ovarian, stomach, and aggressive forms of uterine cancer, such as uterine serous endometrial carcinoma."

Confused?  Uh, yeah.  So this is all you really need to know.  HER2 is positive in only about 20-30% of stomach cancers, which is what I've been treated for.  Since I've now shown up HER-2 positive, we've pretty much deduced I have stomach (also known as gastric) cancer.  So there's that.  Also, HER-2 positive cancers react very well to a type of treatment called Herceptin.  See, HER2 is in normal cells in which their receptors tell cells to grow and divide.  Too many HER2 receptors, as is the case in these cancers, send more signals, causing cancer cells to grow too quickly.  Herceptin has been shown to stop the HER2 receptors from signaling the cells to grow.  Basically it's a blocker.  It increases the median overall survivor rate of advanced gastric cancer by 23%.  In the cancer world, that's pretty big. 

So the good thing about Herceptin is that it has very few serious side effects.  Mostly tummy troubles and fatigue.  But you know what it doesn't cause?  HAIR LOSS!  I get to keep my hair!  Unless the carboplatin decides to cause the fall out, which it typically doesn't do, but I'm not about to jinx myself.  So that $700 human hair wig I bought last month?  It'll stay in my closet for now.  There may come a point where I'll need it, but hopefully not.  And I don't mind it being there at all. 

The BAD thing about Herceptin is that it can cause, how shall I say... heart failure.  Sometimes there are signs, such as decreased breath, pain, etc.  Sometimes there are no signs.  So I have to get an EKG on Tuesday to make sure my heart is starting out healthy.  Then I have to have one every 3 months to make sure my heart remains healthy.  Even more reason to get on the spin bike and stay active! 

After so many rounds, once the cancer is back in or close to in remission, my doc said there's a possibility of keeping me on just the Herceptin to prevent the cancer from growing any further.  I'd get just the Herceptin every 3 weeks and go about my day, using the Herceptin sort of as maintenance. 

So I look at this as another step in the process.  Another way to fight this horrid disease and keep myself going until they find a cure or a drug that turns cancer in to a chronic disease.  That's the plan. 

And, ladies and gentleman, while the docs won't officially put it in my file, they got as close as they could to naming this stupid disease ravaging my body.  Know what that means?  It means...

 

I have a color!!!

And, as I said to my sister, it ain't blush or bashful, but it's a color. (go ahead, name that movie)

Finally, just in case you didn't know, November is stomach cancer awareness month.  It's also pancreatic cancer and lung cancer awareness month.  Be aware.  Go to the doctor and be preventative.  Quit smoking.  Eat right and exercise.  And be happy.  And yes, all those things can coexist.

Ok, the ativan is wearing off and I'm getting tired and starting to get a headache.  Big, big day.  I gots to go. 

Happy Thanksgiving all!  Gobble gobble, yo!

xo,
Lisa

 



Round 2, Treatment 1/3

Ok, so generally speaking this treatment was a breeze, so it only gets counted as 1/3rd of a treatment.  I got hooked up to the 5FU on Thursday, 11/17, and was unhooked Monday morning, 11/21, and went right into work.  I even went to a family function that Sunday with my pump safely tucked into a very attractive fanny pack.  It's all the fashion rage right now.  I had some minor nausea throughout the week, but nothing a little Zofran couldn't handle.  Mostly I was tired.  After the 5 days on the pump, I found that my body was just worn down (though not to the extent it was at the end of the last treatment round).  I went to bed most nights around 8:30, and I think one night I went up and fell asleep at 6:30.  Next time should be the real challenge.  We'll see how tough I really am!

So today is sort of a tough day for me.  I have to get over the mental challenge of working with a disability.  And that's what cancer is to me, a disability.  Some days I'm tired, or nauseous, or whatever, but with some concessions, I can work my 40 hour a week job and, in all honesty, it will be good for me to keep my mind busy.  But my challenge comes in thinking people are treating me different because I am in treatment.  I don't want to seem fragile, or be taken easy on, or whatever.  But I also don't want to be extra challenged just to see if I can handle it.  And the stress of those ideas swirling around in my head isn't good for me at all, but I can't get rid of them, which adds more stress.  Maybe I should go see someone about that thing.

I'm also having a lot of pain in my left side under my rib cage.  It started back in July and I thought I had bruised my ribs, but it's lasted for a while.  In speaking to doctors and being my own best advocate for knowledge, I've figured out that my lymphedema is causing the problem.  Here's why - the lymphatic system, unlike the circulatory system, has no pump.  When lymph nodes stop working at their best for any reason, you run the risk of lymph fluid building up in that part of your body.  My lymphedema started because I had a node taken out from my right groin, and because rest of the nodes left in my groin had cancer in them, thus not working at their best.  The result is a big, fat leg.  So now, I have cancer in my right groin, causing that part of my lymph system to slow down, and the result is actually built up fluid in my abdominal cavity.  In turn, that fluid has pushed a bit into my left lung (common).  On it's own, the amount of fluid in that lung would not cause symptoms, but you add my swollen abdomen and my poor performing lymphatic system, and it's just ripe for overload.  The pain comes when that part of my body gets extra swollen, like after I've eaten a big meal, or if I've been laying on that side for too long, thus allowing any fluid to drain down there, putting extra pressure on that lung.  Painful.  So I've found the remedy is exercise.  The only way to get the lymphatic system moving is to move.  When the pain gets bad after I've eaten a big meal, I walk up and down the stairs a few times.  Within 10 minutes, I'm feeling better.  Night time is more difficult.  I can't seem to find a great position to sit or lie down, so I toss and turn a lot.  Meds don't help too much and I don't really want to become dependent on them.  And really, with GI cancer, do I really want to add NSAIDs or ibuprofen in my system in mass quantities?  Um, no.  So I ordered a spinning bike that will come in next week and the goal is to do quick, 15 minute bursts of exercise twice a day.  Hopefully that will keep things pumping!

Finally, we've had two losses in the cancer world that hit close to home for me.  Both are women, both are mothers.  Both taken way too soon.  Each time someone passes, more fear is put into me.  Sean is a great dad and I have the most amount of faith in him as a dad, but a child needs her mother.  I fight for Katherine.  She is who I have always fought for.  These two losses, however, prove that sometimes a mother's fight is just not strong enough for cancer.  And that's too scary to think too much about.  These reminders come in now and then, though, and you can't help but reflect.

So in the spirit of ending this terrible disease, I am going to share some information here that was passed along to me.  I know it is the month of pink.  God knows we see it everywhere.  But remember there are a whole bunch of cancers out there that are colored in various shades of the rainbow.  Educate yourselves, protect yourselves, love yourselves.  You are not here forever, but try to be here for a while.

xo,
Lisa

Mesothelioma Cancer Alliance - mesothelioma is a completely preventable cancer (caused only by asbestos exposure), so knowing more about the disease and it's risk factors truly does make a difference.

The Leukemia and Lymphoma Society - Amazing work is being done for blood and lymphatic cancers, but we need speed things up.  Time is essential.

Finally, The American Cancer Society, LiveStrong, and Stand Up 2 Cancer, all do amazing work in raising awareness, helping survivors and caregivers, and funding valuable research to help end this awful disease.  Please take some time to visit each and learn more about them. 

Bringing Back the Blog

Well, it happened sooner than I would have liked, but the blog is back.  My last scan showed an enlarged lymph node in my left groin (opposite side from where it was originally found), and a needle biopsy done this past week showed it to be positive for cancer.  Still no idea what KIND of cancer, but cancer none-the-less.  So treatment begins on Thursday.

Now I had really hoped to make it clear through this year so that I could go to  Disney and enjoy the holidays without having to work around a chemo schedule, but seems that dream was in the pipes.  What my doctor did agree to, however, is modify my first treatment to only include the 5 (again, aptly named) FU.  The hope is, while we know the 5FU will probably not kill the cancer that exists, it will keep it from growing further, thus putting me into a sort of holding period until I get back from Disney in November.  I will start full blown treatment November 22nd.

I have told my boss and those needed within my new company of the news, and they have graciously agreed to work with me so that I can continue to work while getting treatment.  Now that I know what I'm up against, I fully believe I can continue to do my job effectively, with some concessions.  I will need to work from home the week I have the pump in me (although I'm planning on a different schedule from last time, so I will have two days of the weekend in the mix, making it so I only have to work 3 days from home during the pump cycle).  I know it will not be easy, but I also know I don't want to spend all my days at home.  I want to live my life, even if that means living through treatment. 

As my doctor said, we knew this was coming.  We know the statistics.  And I had nearly 9 months of remission, and 7 months of being treatment free.  We know what's possible, and now all I have to do is kick it down again, and again, and again, until they either find a cure, or find another drug that will allow me to live with this horrid, wretched, disease until I'm very, very old.  That's where my mind is.  That's how I choose to look at things.  I hope you can as well, because the more normal my life can be through times of treatment, the more cancer is going to realize it doesn't stand a chance.

xo,
Lisa

Back to life...

Well, my cancerversary has passed and we are approaching one year since my first chemo treatment.  Not as significant a date to remember, even though I'll never forget it.  However, in the time between my cancerversary and my chemoversary, significant changes are taking place.  First, I got a job.  Funny how things happen.  I sent out one resume to test the waters, got a call for a phone interview, then in-person interview, then second interview, then an offer.  One resume.  My doc tells me I'm breaking all the rules.  Bucking the system.  Screw statistics!  Let's hope that trend lasts. 

So I start my job on July 22nd.  I'm extraordinarily nervous, as you can imagine.  I know my brain doesn't work as well as it used to, although it's getting there.  My body certainly isn't the same and I haven't worked a full day since last July.  But more than that, I'm nervous because my benefits will change.  I will lose my disability, lose my life insurance, lose my countdown to medicare (although I don't care much about that, but probably should).  My benefits will start 60 days after the first day of the month after I start (meaning 2 months after August 1, or October 1).  My next CT was scheduled for September 6.  Know what I did?  I rescheduled.  I had another scan yesterday and whaddayaknow???  No measurable disease!!  Woohoo!  So my next scan is now scheduled for October 4th.  Phew!  Yes, I will feel bad if that scan comes back showing disease, causing me to go back into treatment, but I don't plan on that happening.  Besides, I know how I do on treatment now, and if they'll work with me, I'll continue working while on treatment for as long as I can.  And no, my new company doesn't know I have cancer.  Nor will they unless absolutely necessary.

Finally, we're moving.  The moving van comes on Thursday to take everything over, although we get the place on Monday, so we'll start moving small boxes and breakables then.  I'm very excited to be moving, actually.  Katherine will be able to stay in Malvern School for after school care, and Sean and I will be closer to work.  I'll be 15 minutes away!  Well, at least until my company moves in December to its new building.  Then I'll be 20 minutes away.  :) 

This has been a very stressful month for me and I've held up fairly well, I think.  I'm still plant heavy in my diet, although I've had more meat this past week than I'd like to.  I've decided to go completely vegan in August and see how I do.  Gluten free and vegan is not easy, let me tell you!  But I'm committed.  With every good scan, I become more and more determined not to let this beast back into my life.  So with that...

I'm closing down this blog for now and starting a new one focusing on health and happiness.  You can keep up with my doings here if you'd like. I hope to see you all over there!

And thank you all, for everything.

xo,
Lisa