The reality of it all

I bristle when the word “gift” is used in the same sentence as “cancer.” There is no upside to having a life-threatening illness. It can ruin lives, friendships, families and dreams, and trying to focus too much on finding a silver lining can trivialize real suffering. I would never have voluntarily chosen to go down this path. But like any other struggle, cancer has changed me. - Suleika Jaouad

I posted the link to Suleika Jaouad's latest blog on my Facebook page. Here it is for those who do not have (or choose not to have) Facebook access. She has been someone I've turned to over the length of my treatment for solace. She writes the words that often roll around in my head, and it brings me comfort to know she is out there, as are so many others, fighting the fight no one should. Shortly after reading it, I learned that Hillary Kind, featured on this year's Stand Up 2 Cancer telethon, the girl with the bucket list including sky diving and meeting Dave Matthews, recently lost her battle with melanoma. She had outlived expectations given to her early on in her diagnosis, but still left this world far too young, too soon.

There are many days - most days - when I put on my happy face to those outside of my house, even though I do not feel the happiness inside. I have to. I have to do it for my own sanity as well as that of those I love. I cannot be constantly scared, depressed, disengaged. But the truth of the matter is a lot of the time I am scared, depressed, disengaged. I am not even 6 months into my battle and I have no idea how long it will last. I have no idea how long this treatment will work before I need a new one. And what scares me the most is that they don't even know what I have. They don't know how best to treat me. It's all trial and error with me, with an unknown primary. Luckily my first treatment plan seems to be working. Platinum based therapies take their toll, though. I won't be able to be on it much longer. I have a limited time right now to try and kick this thing into remission. That scares the hell out of me. The 5-year survival rate on cancer of an unknown primary is not good. Not much better for gastric cancer, which I know the doctors are leaning toward as the ultimate diagnosis for treatment options. Left alone for days at a time, you start to think about your own mortality. Most of those around me are not really ready to have those conversations. So I put on a happy face and talk about the future. What I'll do when I get back to work. Of all the places I'm excited to take Katherine when she's old enough. When I'm able to finish my Master's degree. Things that all take time.

I know that I have a limited time here on earth, be it 5 years, 10 years or 20 years - and I have no idea how to spend it. I don't have the luxury of realistically thinking I will make retirement age 25 years from now. Don't get me wrong, I don't intend to give up. I still have hope and I still have fight, but I am also not going put things aside for 25 years from now at the expense of living for today. I don't have that luxury anymore. But when I think about what I want to do, what's on my bucket list, my mind is blank. I have no bucket list. I'd like to see my daughter grow up, become and adult, get married if she chooses. I want to see her turn into the person I already get glimpses of, and see what remarkable things she will do in her time. That's not really an item you put on a bucket list. But I don't have things like "go skydiving" or "get a tattoo." I'd like to travel, but there is no one place I'd make it a goal to visit. Perhaps the Grand Canyon. I don't know. That seems trivial. The fact of the matter is most of the things I wanted to do during my life seem rather trivial now. It's not about things anymore. It's about time. Time I can't count on and time I can't wait for. People say to me, "You need to live your life. Don't let treatment stop you from doing that." How do you do that when you spend so much of a 3 week treatment cycle sick? How do you do that when you don't have the means or the method? How do you do that when you don't have a clue of what you want to do? Even before I was sick, I had no idea what I wanted to be when I grew up. I was constantly going back to school, learning new things, trying new fields. I thought I had found the perfect mix of my education and my work background, but looking at it now, I think - is this what I really want to do with the rest of my life? Is this my life's work? Or is it just a means to a financial end? Don't get me wrong. I'm not looking for a handout, or a new job, or even suggestions. These are questions in the air. Things that go around in my head when I'm alone. Things Sean is probably tired of hearing me say. Things I need to sort out for myself. No one else. Just me.

Many people I know send me prayers and, while I greatly appreciate any and all prayers given to me or said on my behalf, I'm not one to pray. I'm not religious. I have my own spirituality. I know that sounds trite, but for me it's the truth. I don't go to church, I don't pray - to be honest, I feel stupid praying. I don't discuss religion or spirituality with anyone other than as a subject of debate. I keep my faith private and I will continue to do so. I believe people need to find their own path. I'm still struggling with mine. On one hand, I have faith that good thoughts and prayers do work wonders on the body and in the universe. On the other hand, I don't believe for a second my God would have put this on me or anyone else. When people say God has a plan or God works in mysterious ways or everything for a reason, I want to punch them in the face. No offense. What plan allows a 4 year old girl to lose her mother? Why would God be so cruel? I refuse to believe that is the case. My God is not that cruel. My God knows I know this is not His plan, and He knows I know He cannot heal me (if that was the case, there would be no cancer, because God - like cancer - does not discriminate), and He knows the saying "That which does not kill us makes us stronger" is ridiculous at this point and should be banned from all cancer patients' listening range.  But He also knows I know this is something that will reveal itself to me at some point, my purpose, my meaning, my life's work, when I'm ready. My job, in the meantime, is finding peace with what is going on with me, with the possibilities of the future, with the reality of how my daughter will grow up - whether I'm here for that or not. It has all changed and that is something I cannot change. There are so many possibilities, both good and bad, and all so overwhelming, and it is a big charge finding peace in all that I've been dealt.

I'm still working on it. But I will find it.

xo,
Lisa

Edema is a b*tch

I realize it's been a while since I've posted.  I've had a nice, 4-week treatment cycle this time.  Good thing, too, as my treatment would have normally fallen on the day Sandy made her appearance on the East coast.  I go in for treatment #2 of this round tomorrow.  My body is starting to really wear down.  I have edema in my right leg that has progressively gotten worse over the weeks.  My doc thinks there may be scar tissue in my groin from when the node was taken out for the biopsy in June.  Combine that with already enlarged and malfunctioning nodes from the cancer, and the lymph nodes in my groin are just not functioning well enough to get rid of the fluid in my leg.  It's a b*tch.  My hip to my toes are swollen.  My left thigh is two inches smaller than my right.  I have a compression sock from CVS, but it only goes to my knee and the issue is higher than that, so I really need one custom fitted.  Doc put me in for physical therapy so I should be getting a call early this week to set up an appointment.  They are certified in Manual Lymph Drainage, which is a specific type of treatment consisting of massage, compression garments, and specific exercises.  I'm hoping the damage isn't permanent and breaking up the scar tissue combined with the massage and compression garments will help reverse the swelling.  Lymphedema doesn't react the same as swelling from other issues, like muscle damage or infection.  You can't ice it or heat it.  You actually can do more harm than good by doing so.  Water pills and diuretics don't work, as the issue is within the lymphatic system, and not an excess of bodily fluid.  Just have to get those lymph nodes to work properly again and we're in business.

The change to carboplatin from cisplatin definitely made a difference.  I wasn't nearly as nauseous this time.  I was much more tired and my taste didn't come back until end of week 3, which is late, but my doc agreed the fatigue and extension of loss of taste is probably due to the length of overall treatment rather than the carboplatin itself.  The longer you're in chemo, the more it affects you.  I look forward to my first break, whenever we decide that is. 

I made a comment on Facebook a little while ago about understanding how people go into bankruptcy from medical bills.  Understand that I don't usually talk to people about my own finances, but that comment wasn't about me.  I stand by that statement.  However, I am more and more appreciative of the insurance I have.  I haven't paid a dime toward chemo yet - insurance has covered it 100% - and the majority of my bills are copays.  I've had a couple hundred dollar bills from my early procedures and surgery, but overall, my medical bills from diagnosing my Celiac disease last year were more expensive than this year.  I do see, though, how much the overall bills are, and I realize how easily people can get crushed underneath of them.  My insurance covers 90% of my medical expenses.  I know people who have a 70/30 plan, and my work has a high deductible plan which, if I was on it, would require me to pay $5000 in deductibles for a family before getting coverage.  That's absurd.  That's how I understand how lucky I am and how others are not as lucky.  In addition, I'm on LTD now, which is 60% of my pay.  This requires a stiff tightening of the belt and gives you a big kick in the pants when you wind up having to have brakes replaced on a Volvo the first week you're at a reduced salary.  I've got it, but it doesn't make you feel good.  I appreciate all of the offers of help.  I'm ok, though. There are people out there with much more of a need for financial assistance, like those who lost everything during the hurricane.  I can cover my bills.  We went shopping today and got Katherine a new coat.  She's still in day care full time.  I'm still planning a trip to Disney next year.  It just hits you hard when you go from 100% to 60% in a matter of months, that's all.

My thoughts go out to those still recovering from the hurricane.  We weren't really affected here at all.  No loss of power, no downed trees (not that we have any).  Katherine's school reopened on Wednesday of that week.  We had some damage done to the flashing on our roof, but it's minor and homeowners will cover it.  My in-laws just got power last night.  I know people still without it.  The people in Seaside Heights and Breezy Point, those people will forever be changed.  I cannot imagine.  I think of them often.  With everything I'm going through right now I have my house, I have my family, I have my beautiful daughter.  I am lucky.  Maybe not in health, but that will change too if I have anything to say about it. 

In closing, as I mentioned previouisly, I'm much more tired as treatment goes along, so if I don't get in touch or get back to you, I apologize.  I like to try to squeeze in as much contact as I can on my good weeks, but it's just not always possible.  I know many of you want to come visit and that would be great, but I'm not really up for much when I'm not feeling well.  Those who know me know I won't sit still if I have a visitor, so it's best just to wait until I'm feeling better.  I'll get everyone in at some point, I promise.  I ask that you please just be patient (and forgiving!).

Take care all.

xo,
Lisa