2nd Treatment

My second treatment was yesterday, August 27, coninciding with Katherine's 4th birthday.  The only up side to this is that day one is usually ok as far as how I feel.  Aside from having the 5-FU pump attached to me, nothing was out of the ordinary. She was overwhelmed with her birthday weekend - family party on Saturday, lunch and shopping for new shoes Sunday, cupcakes to school and then presents from Mommy and Daddy on Monday - her schedule is out of whack because she's so exhausted by bed time, she has a hard time getting settled.  But this week back at school should help her get back on schedule.  She also, for the first time, expressed worry about me and the medicine I'm getting.  She told Sean Sunday night in bed that she was worried about me because I had to get more medicine and thought she wouldn't see me at all for her birthday.  She came downstairs and I assured her I would be here when she got home.  She asked for me when she woke up, and Sean reiterated I would be there when she got home.  And when she walked into the house and saw a princess tent waiting for her, she was back to her old self.  No worries at all.  I even joined her in her tent for a while (as Belle - Kat was Rapunzel and Sean was Eugene, of course.  Daddy is always the Prince.). 

As you can see, I'm in scarf/hat/wig mode now.  The hair is mostly gone.  I went in last Tuesday and got my head shaved to 1/2 an inch and it's fallen out much more since then.  Oddly, I still have the hair on my arms and legs.  Eyebrows and eyelashes are still there but I don't know for how much longer.  Some lost them all, some just have thinning.  I don't know which I'll have.  Only time will tell.

So second treatment started yesterday.  The day went well.  As I said, I don't get many side effects on day one.  Today I woke up with some nausea and quickly took my meds for the morning.  My docs agreed that the extensive nausea last time was not normal and needed to be addressed.  They lowered my chemo dose by about 20% (I was assured practically no one can stay on the level the first start you, but they go from the recommended dose from the studies and then adjust from there).  I will also be taking steroids in addition to the anti nausea meds starting Thursday, as they give me IV steroids with the IV chemo on Monday and that stays in my system for 3 days.  On the first three days as well I take Emend, which is a tri-pack of anti-nausea meds specifically made for chemo patients.  Day one works great, but even last time by day two I was sick, so I'm not sure how much it helps.  I don't really want to find out, to be honest!  I could be much worse than this!  My goes for this round of treatment is to try to be as present as possible and not be in bed all the time.  We'll see how well that works.  I find that sometimes being in bed away from Katherine allows her to play more and not think about Mommy being sick, whereas laying on the couch and not being able to do anything keeps it in her mind and makes her worry more.  Nausea usually takes charge, however, so we'll see how much control I can have over this decision. 

I've called Penn to set up a time to come in for a second opinion.  I'm waiting for a nurse navigator to call me back (which should have happened by now, but I've been too busy to care that it hasn't) and set up an appointment.  When I told my doctor, Dr. Dotan, she was excited.  A former colleague of hers, Dr. Roger Cohen, works at Penn and specializes in cancers of an unknown primary, as well as head and neck, and lung cancers.  She said if anyone would know what to do, he would.  She gushed.  Literally.  She let me know she'd send an email to him letting him know I'm setting up an appointment.  Because they will probably put me in with a GI doctor when they set me up, it's important to mention his name to scheduling to try and get in with him.  I was happy to hear her excitement.  Any time your doctor shows enthusiasm over something related to your condition, it's a good thing.  She also told me she was optomistic that my treatment would work.  I know she can't know that for sure, but just telling me she was optomistic lifted my spirits and I've been holding on to that for days. 

I have edema in my right leg, as that is the leg with the enlarged lymph nodes, and they seem to be blocking the nodes from doing any normal work, thus causing swelling.  It's gotten worse over the last week and I'm hoping this round of chemo will reduce them a bit and ease up on the edema.  It's not painful, but it's very uncomfortable.  Typical feeling of swelling - tightness, heaviness, etc.  I'm back on the 3 week rotation with my chemo now, so since the edema started in week 4 this last time, I'm hoping it never happens again!

On a final note today, before I suck down my smoothie for breakfast in the hopes it takes away some of the nausea, I've received so many amazing cards and letters from people this past month - some from people I haven't seen in years.  I even just got a post card from long-time family friends (the kind you call cousins that aren't related by blood - you know the ones), that they are running in my honor in the LiveStrong run upcoming.  That's an amazing feeling when you read that.  Your thoughts and outpouring of kindness has been uplifting and overwhelming, and I wanted to give you my heartfelt thanks.  The support I've been given is beyond anything I would have imagined.  Lifting my spirits with each receipt.  And a good spirit lifting is what I need most right now, as being on disability gives you a lot of time to think, and not all of the thoughts are good, of course.  So thank you all.  I really appreciate the support.

Don't forget to watch the StandUp2Cancer fundraiser on all major network channels on September 7th.  Any amount will help.  http://www.standup2cancer.org/

xo, Lisa

The hair

So it appears they lied when they told me my hair should thin, but not fall out.  During my shower on Monday, I was rinsing my hair and it was coming out in handfuls.  Then in brushfuls, after.  And ever since I can't run my hands through my hair, or even touch it, without winding up with a handful of hair.  So yesterday I went out and bought a wig at a great salon in Collegeville that offers them ever since the owner's wife was diagnosed with ovarian cancer.  (She has since passed away, but her legacy of helping patients feel better about how they look lives on, and that's a great, great thing.)  Being that I'm not quite ready to wear the wig full time, but I couldn't continue tying what was left of my hair up, I went almost full Britney and got a pixie cut.  Well, sort of.  It was hard for him to cut since it was coming out in handfuls when he combed through, but he did a decent job and for a few more days I have the first super short haircut I've ever had since birth.  My dad will be happy -  he loves short hair.  I told him he has a few days to come see it or he'll miss it!  So here it is.  The only picture that exists of me with super short hair. 

For those wondering, I feel much better this week than last.  The nausea is being kept at bay with meds, although it is still underlying, but my taste has changed and it's hard for find anything to eat that doesn't taste metallic, or acidic, or something -ic.  Plus, being gluten free, my food choices are limited.  Fruit is the only thing that tastes sort of normal, although dulled, so I eat tons of it, which I guess is good for my body. 

Next week I will be preparing for my daughter's birthday party and subsequent birthday.  She's turning 4.  I don't know where the time has gone, but I think it has been condensed into her as one little ball of attitude.  Although, if I have to admit it, I love that she has such spunk.  She's a handful, and it gives me a glimmer of what she'll be as an adult and I love what I see.

Thank you, all of you, for the overwhelming support you've shown during this most difficult time.  Your response to my first post was overwhelming, and I definitely am lifted up by your kind words and prayers.  I don't know that I'll be posting again until after my next treatment, so enjoy the remainder of your summer all!

xo,
Lisa

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.  ;)