Living With The Side Effects.........

5/19/13--Sunday--Day 218--It Is What It Is 

I am three days into my third week, the week my blood cells are supposed to be repairing and rebuilding enough to do this all over again come Thursday.  These last three weeks have been quite a ride.  I am so glad I blogged about the scary and challenging days so when I go back through this again, I can re-read my posts and remember I can survive the side effects.

Week two brought pretty challenging fatigue, swollen feet and hands, and absolutely no return of my tastebuds or appetite.  I continue to be thankful that I have a job done mostly sitting at a computer because throughout the week, the littlest bit of exertion some days completely wiped me out.  Monday I was reminded that my taste had not returned when I attended a luncheon at a Mexican restaurant and still couldn't really tasted much.  Even now, my tastes is extremely limited.  The good thing is, I can't tasted foods like chips, ice cream, chocolate, sweets, candy or even popcorn so I don't snack at all.  Strawberries and fluff still have an uncanny attraction so I've stocked up on cream cheese and marshmallow.  With the fatigue this week, I have tried to eat protein hoping that would help, plus, meat seems to have some flavor for me.

As for the fatigue, most of the week I worked through lunch then left the office fully exhausted only to come home and fall asleep in the recliner for a few hours.  Thursday, we decided to try a walk after work.  That was difficult.  Before we made it back, I hit that wall of fatigue and ended up standing in a field crying and frustrated, but we finally made it.  Friday wasn't much better.  At lunch, I tried to do some grocery shopping, something that has been a huge challenge.  We thought it might be easier at lunch than after working all day, but, by the time I was walking to the car, I was in tears once again.  I don't know why the fatigue brings tears, but they just start, and I can't really control them.  Greg has been so amazingly patient.  I feel so badly for him.  He has been right by my side every day supporting me, encouraging me, and helping me face everything from pain to fear to fatigue.  I don't know what I would do without him.

My feet and hands have also experienced quite a bit of swelling.  I've never had trouble with my ankles swelling in the past, but much of week one and some of week two I couldn't see my ankle bone.  When my hands first started swelling, I took two of my rings off, thank goodness.

Saturday we decided to try a day-trip to the lake.  Greg's dad, Randall, joined us and Preston and Yuri met us there.  I stayed under the canope driving the boat most of the day.  By early afternoon I was pretty tired, but was able to hang in there for the rest of the day.  We left by 3 after a great day watching Greg, Preston and Yuri ski, air chair, and wake surf.  When we got home I slept several hours, but I was really glad we went.  I didn't get in the lake, first, because it was cold, but also because I was just a little worried about being susceptible to infections or something.  Plus, with me being so cold all of the time anyway, I was too cold to get colder.  The coldness isn't nearly as bad as it was on Taxol, but I am still colder than normal most of the time, especially my feet.  I stayed wrapped in a coverup and towels most of the day at the lake, but my feet seemed cold all day.  My feet have actually been bothering me A LOT!  They are still very numb, yet very sensitive.  It's hard to explain other than the pins and needles you feel when you first walk on feet that have fallen asleep.  I feel that all of the time so walking is sometimes like walking on a shoe full of sharp rocks.  I'm still keep hoping that it is temporary and will eventually go away.

Today, Sunday, I notice my right hand and arm were swollen quite a bit.  I'm afraid lymphedema may have finally caught up to me, despite all of my efforts to avoid it.  Greg does the lymphatic massage every day in the shower; I haven't eaten salt since January; I wear gloves when I do any kind of work with chemicals or even to wash dishes; and most difficult, I have completely avoided the hot tub.  Despite all of this, today my hand is swollen so much that I could hardly put on my dish gloves.  Once I notice, I had Greg help me put the sleeve and glove on and I wore it all day.  By this evening, when I took it off, the swelling continues and I can hardly see my knuckles.  I am so very sad about this new issue.  One of the side effects of 5-FU, one of the chemotherapy drugs, is something called Hand-Foot Syndrome, which is also characterized by swelling.  It would be great if this were that, but because the swelling is only on my right side, I'm not sure if this is Hand-Foot Syndrome or the Lymphedema.  I will call the doctor in the morning.

I did start the day with more energy than I've felt in three weeks; however, after doing a few chores around the house, just after putting my sleeve and glove on, a wave of fatigue sent me to sleep in the recliner again, but only for about 45 minutes this time.  This afternoon we did manage to go see a movie, The Great Gatsby.  I couldn't help but think that every college prep English student I taught in the 80's and 90's has to be thinking of my class when they see that advertised or see the movie.  It was a nice break from my current reality and lots of reminiscing of the many years I taught that book and all of the symbolism in it.  And to end the day, I had a great visit with my friend and one of my former yearbook editors, Shawna Brown Kruglar, who was in town for the weekend.  It was nice to spend some time with her, her parents, her husband, and her three beautiful children, one whom she named Lindsey after me.  That always makes me smile.  I loved watching her beautiful girls, five and seven, play, as well as her son who has grown so much.

Emotionally, it has been a very challenging few weeks.  Greg has really struggled as well.  He seems to somehow feel some of the same things I do--sympathy pains I guess.  I know we both have been emotionally challenged by this.  I did do something that was really hard for me but important.  We had insurance sign-up at work two days this week.  That is when everyone in the district comes to the District office sometime during those two days and signs up for insurance.  I took a picture of me from last October, and another of me from this month with my bald head.  I placed the pictures side-by-side.  Above the pictures I wrote, "Considering Cancer Insurance? Think Hard. I'm Susan Lindsey and I'm 48.  No one in my family had cancer."  I printed and framed the picture and took it to my friend, Jim, the AFLAC representative, to display as people came by to see him.  It was tough because I haven't really shown "the public" my bald head.  I always wear hats or scarfs.  But it was such an important cause to help people really consider getting a cancer policy, so I decided to do it.  It was one positive thing I felt like I could do because of cancer.

So after this really tough couple of weeks, and an exceptionally tough Friday, one thing that finally settled in with me this weekend is simply, "It is what it is."  I know that probably sounds trite, but for the first time, deep down inside, I've realized I just have to accept whatever this whole thing brings with it, no matter what that is.  Sometimes that is really, really hard.  I feel so ugly most of the time, and now I have this swollen arm.  I've also lost several chunks of eye lashes and fear I may lose them all, which is about all of the female left of me.  I've been frustrated by the look of my right breast as it has started to pucker and sink in around the scar, and it is so much smaller than the left.  It's easy to get down and frustrated, but for some reason, this weekend, I took a deep breath and just realized, "It is what it is," and really, there is absolutely nothing I can do about it but survive and get through it.  So, as ugly as I feel, as awful as these side effects are, I am alive and I want to stay alive--I want to kick this thing.  A co-worker stopped by my office this week. While we have talked on the phone several times this year, he had no idea I had cancer until he saw my picture at the AFLAC table during insurance sign-up.  He came to my office to tell me how sorry he was and that he had no idea I had cancer.  And then he told me he lost his 48 year old sister to breast cancer in February after she fought it for two years.  "She did everything right," he said, "but the treatments just weren't enough and it came back and took her."  My heart sank.  I realized this weekend that no matter what happens to me, nothing is as important as surviving.  I want to live--ugly, scarred, swollen arm, numb feet--no matter how hard it is, none of it really matters as long as I live.  I am 48 years young and as hard as this all has been, it is time for me to accept all of the side effects of cancer because honesty, "It is what it is" and survival is all that really matters.