The start

Let me start at the beginning.  Or what I think is the beginning.  It's hard to tell.  A few years ago, about a year after my daughter was born, I started getting migraines.  I'd had migraines before, back in the early 2000s, just before I was diagnosed with hypothyroidism, so I thought these were because my thyroid meds were still off after pregnancy.  The doctor gave me Imitrex to help as I got them, and things were fine.  I rarely got them.  Maybe once every 2-3 months.  Then about a year later, they started increasing in frequency, and pretty soon, by early 2011, I was getting 2-3 a week.  Unacceptable.  Clearly.  I went back to my doc and she suggested an MRI, just to make sure.  I got the MRI and went on my merry way, not thinking anything, but then I got a call from my doc.  There was a lesion on my brain, very small, but I needed to follow up.  I scheduled an appointment with a neurologist who started the various (expensive) tests to try to figure out the cause.  The lesion presented like MS, but I had no symptoms of MS, so it didn't add up.  So blood test after blood test, scan after scan I went, and nothing.  She put me on Topomax to curb the migraines, and although I lost 20 lbs. (side effect from the drug) and my family kept telling me to eat because I looked sick, I was finally feeling better.  Around this time I also started with a new endocrinologist (who I credit for straightening me out more than anyone), and she started asking questions trying to discover why my meds would still be off, which they were.  She finally asked if I had digestion issues.  I said no.  She said, "Well, I'm going to throw in a test for Celiac disease anyway.  It might be preventing proper absorption of your meds."  So she did.  And what do you know?  Positive for Celiac disease.  I called the best gastroenterologist in the area specializing in the disease, yada yada yada, positive biopsy for celiac and it's confirmed.  I'm officially gluten free.  That was October of 2011.  My next MRI showed the lesion was gone.  Hurrah!  By February the migraines had gone away and I was off the Topomax (and almost instantly gained back most of the lost weight).  I finally felt healthy.

In March of 2012, I noticed enlarged lymph nodes in my right groin.  Knowing this could be nothing - a minor infection, irritation, whatever, - I took note but figured I'd ask my gyn when I went for my annual in May if they were still there.  In May they were, so I asked, and she said yup, go get them checked out.  She ordered an endometrial biopsy and ultrasound on her side, both of which came back normal except for a rupturing cyst in my right ovary, which was thought to be nothing of importance.  I went to my primary care and she suggested a general surgeon to do a biopsy.  I had that done in June. 

On Thursday, June 21, 2012, I got the phone call that would change my life.  My biopsy came back positive for cancer.  Now here's the thing.  I knew it would at that point.  Lymph nodes don't stay enlarged for 3 months for no reason.  But what he told me would rock me to the core.  Metastatic carcinoma.  Metastatic.  What?  I thought he would say lymphoma.  I still didn't process this was not possibly lymphoma even days later.  Metastatic carcinoma, but they can't tell the origin.  Possibly gyn or bladder.  What?  But I've had a year of nothing but doctors and tests.  Do I need a recommendation for an oncologist?  What?  Oh, no.  There is only one place to go.  Fox Chase.  I called and made my first appointment with Fox Chase Cancer Center for the next week, and thus began the ride.

Here's the summary.  I've been officially diagnosed with cancer of an unknown primary.  At Fox Chase, I've seen a gastroenterology general oncologist (now my main doc), GI surgical oncologist, urological oncologist, gynecological oncologist, and more nurses, techs, and administrative staff than I can count (they are FABULOUS by the way.  Highly recommend them!).  I've been poked, prodded, had an ovary removed, a D&C, a flex sigmoidoscopy, cystoscopy, upper endoscopy, CT scan, PET scan, and had lots and lots and lots of blood taken.  Oh, and a port insertion.  Since the end of June.  It's now August 11th.  Just sayin.  I hurt.  All of those tests produced nothing.  No source.  The cancer is in my lymphatic system, clearly, and the blood stream, but there is no tumor present anywhere in my body.  This does not mean hop up and down, jump for joy.  This means oh crap, how do we treat this?  So my doctor, Dr. Dotan, presented my case to various medical boards and this is what she said.  The cancer seems to have broken up from wherever the original location was and is now floating around my body.  So there is no surgery and there is no radiation.  Because the cancer cells aren't taking a specific shape of any one type of cancer (lymphoma looks one way, leukemia another, tumors another), it's hard to tell what kind of cancer it is.  The pathology says it's most likely upper GI - pancreas, stomach, esophogus.  Aside from the pancreas, which feels fine but of course has not been biopsied, everything else looks normal and has no cancer in it.  My blood work is all normal.  No cancer markers.  Nothing.  But the pathology reports still say GI.  So we're going with an aggressive chemotherapy plan.  Three different drugs, every three weeks, for 12 weeks.  Cisplatin, Docetaxel, and 5-FU (fluorouricil).  I go in on Monday for 2 bags of saline, various anti-nausea meds, and then the cisplatin and docetaxel.  That lasts for about 5 hours.  Then they hook me up to a pump of the (appropriately named) 5-FU and that comes home with me and slowly drips over the next 5 days.  That's fun.  I go back on Friday and they take out the pump.  On Saturday I go back in for a shot of Neulasta, which increases my white blood cell count.  I am then home for 2 weeks before I go back and do it all again. 

The first day of chemo is fine.  So many drugs I feel fine.  It's about Tuesday night that the nausea hits.  I have 4 different kinds of anti-nausea medicine at home with me and nothing seems to take it away.  Or else it's doing a great job and I'd be clung to the toilet for 2 weeks without it.  Instead I'm in bed, lying as still as possible so as not to stir up the nausea more, causing a dash to the bathroom.  I started my first round on July 30th and, I am not lying to you, it was August 9th before I could eat anything.  Hair thinning but no hair loss.  A small consolation when you're in bed all the time anyway.  Changes in taste - everything tastes metallic.  Mouth sores.  Other side effects I won't mention.  I get to do this three more times before we do some more scans and see if it's working. 

At this point there is no cure.  The treatment is palliative.  The hope is to keep it where it is.  The cancer is not in any major organs and it is not in the abdominal wall, and that is very good.  It may be my imagination, or wishful thinking, but I swear my lymph nodes have decreased a little in size.  They are the only measure I have of any effectiveness right now and I'm glad I at least think they are going down, because it helps with the positive thinking.  If we're still in good shape after this 12 week round, I do another one, although it will probably not be quite as aggressive.  After a few more of them, if we're still where we are, I get to take a little break.  At some point I may request a hysterectomy because my cervix and ovary showed a presence of cancer, although in the lymphatic system within them, not in the walls.  Even so, I'd rather have whatever trace can be taken out to be taken out.  I don't need them.  We hope for long periods of stability.  The goal is to be monitoring, not fighting.  As long as it stays in check, I'm ok. 

So many of you have been checking in with me, asking how I'm doing, asking Sean how I'm doing, asking how Sean and Katherine are doing.  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.  We're ok.  I promise.  I have family close and they help.

But as you can imagine, two straight weeks of nausea leaves me out of pocket and after that, my life becomes about answer people.  Then it becomes hard just to keep talking about it over and over and over again.  That's why I decided to start this blog.  I thought it a bit cheesy at first, but to hell with cheese.  I need ease right now.  I may go a while without posting, but when there is something new, I will update it here.  I promise.  Please continue to keep in touch otherwise.  For the cancer news, though, this is the place.  It's just easier to keep it in a pocket.  It controls so much right now.  I need some time without it now and then. 

Also, many have offered services and would like to know any way to help.  Right now I'm good, but what you can do is join the fight.  Donate.  Walk.  Wear a bracelet.  Any organization you choose.  Funding for cancer research is being cut, and we don't need that.  We need a cure.  It's out of control.  More than 1 in 3 people are affected by cancer at some stage in life.  1 in 3.  Look around you.  How many people do you know? 

I'm off to bed for now.  I need my beauty sleep.

xo,
Lisa

PS - Don't now go off and look at the statistics for cancer of an unknown primary.  You'll just depress yourself.  And the key is - it's unknown.  Remember that.  ;)