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