Thursday, December 15, 2011

There's a light at the end of the tunnel!

Strength does not come from winning.  Your struggles develop your strengths.  When you go through hardships and decide not to surrender, that is strength.  – Mahatma Gandhi

Haven’t been on here in awhile.  Sorry.  Things got a little hectic with daily radiation, work, and Christmas – decorating, baking, shopping, etc.  Only 4 more rads to go!  I can see the light at the end of the tunnel!  And I will be SO glad when it’s over.  It will be so nice not to make the commute to Viera every day, and it will be so good to give my body a break and give my radiation burn a chance to heal.  I now have a pretty nasty 2nd degree burn on my upper chest – an oozing, bleeding, stinging, itching mess.  A couple of days ago I was getting ready to take a shower, so I went to take the gauze off that Melissa had put on after my treatment.  It was stuck to the burn, so I had to pull it off, which hurt like hell, and then it just started really bleeding – running down my chest and stomach (I bleed easily now that I’m on warfarin).  What a mess!  I decided a shower was going to hurt too much, so I said screw it.  Then I had to get Kenny to clean up the wound and re-dress it – he’s good at that; I’m not.  Fortunately, Tuesday was the last day they zapped the area with the bad burn – thank God!  Now maybe it will start healing.  I saw Dr. Bryant (radiation onco) yesterday, and she told me to get some Domeboro soaks and soak the burn in order to dry it out.  How does soaking something dry it out??!!   It must be along the same lines as the tears dripping off my cheeks are because I have a dry eye problem!!  Anyway, I will comply with her recommendations, although it’s not too enjoyable. 

I also have a burn on my back now, although it’s not a raw wound – just an itchy red area.  Yup, the zapper went all the way through me, which apparently is normal.  Man, this is so much fun.  I sure can’t wait until all this crap is over.

I saw Dr. Sprawls on Tuesday – yes, he was late.  Had to wait an hour and a half to see him.  But he was his usual kindhearted, jovial self, so I was okay with it.  I had a plethora of questions for him – a typed list of 20 questions, to be exact.  He read each question and answered them all.  Another one of Dr. Sprawls’ fine qualities is that he is honest and doesn’t beat around the bush.  He tells it like it is.  Of course, honesty……or the truth……isn’t always what you want to hear.   Here is my list of questions, along with his answers:

  • How long on Coumadin?  3-6 months
  • How often INR checked?  Every 1-2 weeks until stabilized
  • How do I get rid of blood clot?  Can’t
  • When will my leg stop being so big?  Never
  • Okay to fly to Maine in January?  No problem; just drink a ton of water before you get on the plane and have a drink on the plane so you’re constantly getting up to pee; i.e., moving around a lot.  Walk up to the first class bathroom where they’ll throw you out, so you’ll have to walk all the way to the back.  Keep moving.
  • What can I take for occasional headaches while on Coumadin?  Tylenol
  • If I have a colonoscopy, I’ll have to stop Coumadin again.  Will I have to do Fragmin shots?  Maybe, maybe not.  Might just be able to stop the Coumadin and restart it again.
  • Arimidex versus Femara versus Aromasin – pros/cons/side effects (Cocoa Beach Pharmacy) – We’re going to try Femara.  (This is the aromatase inhibitor – AI – that I have to be on for 5 years)
  • Is generic okay?  Yes  (These drugs can be very expensive, and I have no Rx insurance)
  • When do I start it?  Can I wait until I get back from Maine?  Yes, after Maine is fine.
  • It feels so good to feel so good.  Now are we going to mess it up with an AI?  Hopefully not.  Maybe you won’t have any side effects.
  • Fingernails?  (They’re still really ugly – black and blue – and I’ve lost 3 fingernails so far, with more to follow).  They’ll get better; it just takes time.
  • Eyes constantly watering/nose constantly running.  Will they stop?  Yes, but it takes time.  If they don’t get better, I will send you to an eye doctor, and they might want to put stents in to help with the drainage.  (No thank you!)
  • Odds of recurrence or don’t I want to know?  At first he said, “The odds are in your favor.”  And then he looked at my file again and said, “Never mind.  I forgot about the lymph nodes.  You don’t want to know.”  He continued by saying, “The odds are against you.”  But he reiterated the 3 things that will improve my odds – increase exercise, decrease alcohol, and maintain ideal body weight.  And he said, “Most importantly, you must BELIEVE.  Believe that cancer will NOT return to your body. Fill yourself with relentless hope and optimism.  Don’t even allow negative thoughts to enter your mind.”
  • CT for lung nodule seen on original PET scan?  If it was cancer, would the chemo and radiation have wiped it out?  If it was you (or your wife), what would you do?  Get a chest x-ray (much less radiation than a CT)
  • Had port removed – still feels like it’s in there.  It’s scar tissue.  Quit whining.  (I said, “I’m not whining, just asking…..lol)
  • What is my cancerversary date?  Date of DX?  Date of last treatment?  Date of the surgery – when the cancer left your body (2/25/11)
  • What about getting a DEXA scan prior to starting the AI?  Who does ‘em?  By all means.  Good idea.  Wuesthoff Hospital can do it.  (A side effect of the AI is bone loss)
  • When I get sick, do I see you or PCP?  We’ve lived in Brevard County for 24 years, and I don’t think I’ve been to a doctor 3 times in 24 years….until this year.  Didn’t even have a PCP until this year.  Doctors have not been part of my repertoire until this year.  Go to your PCP.  However, if it’s something that won’t go away, come see me.  I can tell the difference between a cold and cancer.  If you’re walking around dragging your leg, come see me.

So there you have it.  Bluntness and all.  He’s really a great guy, and we do a lot of joking around and laughing amidst all the bluntness and truths that I don’t want to hear.  I was really upset about “The odds are against you,” but in the back of my mind I knew that because of all the positive lymph nodes.  It just hurts to hear it.  So I guess I shouldn’t have asked…… 

After the holidays, I need to get back in full swing with the “increase exercise, decrease alcohol, and maintain ideal body weight” thing.  Well, first I have to REACH my ideal body weight.  I did lose 30 pounds this year, which is a good start, but I would like to lose about 20 more.  I also cut way back on alcohol consumption – a glass of wine a day or less (only straying occasionally…..).  I haven’t been too good with the exercise part lately.  During chemo I felt like crap all the time and didn’t feel like doing anything other than what I had to do; exercise didn’t fit into the program too often.  Now the radiation is so time-consuming, it’s hard to juggle the daily appointments and all my work (and Christmas stuff).  So once again, exercise rarely makes it to the top of the list.  HOWEVER, I’ve decided that in the New Year I will be turning over a new leaf.  I’m going to get back to eating healthy – somehow I strayed from that during my “chemo cravings” when the only things that tasted good were margaritas and ice cream!  Carbs and junk food tasted okay.  Protein, veggies, and water tasted terrible.  Anyway, we’re vowing to go back to protein and veggies (after the holidays!).  As for the exercise, I have decided to use the time that I would normally have gone to radiation for biking, walking, working out, etc.  I’ve had to allow 2 hours minimum for travel time and the radiation treatment (usually more if I have to wait for the ‘doctor on site’ or get gas or groceries on the way home)…..and I still managed to get my work done.  So now I’m going to take that time slot and force myself to get up from my work and go for a bike ride and a walk.  I’m going to try to ride my bike to the Pioneer Trail (2.6 miles each way) and then walk the trail (1.1 miles each way).  That should be a good start anyway. 

Oh yeah, I think I’ll start all this after I get back from Maine in mid-January.  I am SOOOOO excited to be going to Maine for 10 days.  At first it was just going to be my sister, Nancy, and me going up there to visit Mom and stepdad Freeland and to celebrate Freeland’s 85th birthday.  Now it turns out I’m going to get to see so much more family, and I’m really excited about it.  My stepmom Shirley, stepsister Becky and husband George, stepsister Penny and husband Zig and son Abe, stepbrother Stuart and wife Donna and 3 daughters Emma, Delia, and Lily, and my niece Brenda – are ALL going to be there, which is going to be so awesome!  It turns out they were trying to keep it a surprise for me, but it was going to be tough because Nancy and I get there a couple of days before everyone else, and we need to stock up on food, drinks, etc.  Anyway, they let the cat out of the bag, and I’m just ecstatic about the whole thing.  We’re not only celebrating Freeland’s 85th birthday but also the end of my treatment and “new beginnings,” etc.  Everyone (except Brenda) has to travel for 6-7 hours to get there, so I can’t tell you how much I appreciate the effort you all are making.  It will be so wonderful to see you all!! 

Well, I think maybe I’ve rambled on enough this morning.  I must put together a cookie platter to take to the fine folks at Space Coast Cancer Center – ‘tis the season to eat unhealthy, yummy-tasting, decadent things!

Just in case I don’t get back here before Christmas – Merry Christmas to all of you.  And I hope you have a wonderful 2012!  I will be so happy to kiss 2011 goodbye!  It has been a very long year – this roller coaster journey of mine started in January – and we’re very much looking forward to a happier and healthier 2012.  Wishing you all a happy and healthy 2012, too!  Hugs from Florida!

4 comments:

Jean said...

Wow, Suzy, that was a masterpiece of a blog entry! You answered all our questions and then some. You are doing all the right things to insure your complete recovery - with Kenny's inimitable help.
We are beyond excited about you and Nancy being up here next month. And what a bonus to have so many family members present for this momentous occasion! It can't come soon enough. You'll have lots of new photos to post on your blog.
I love you, Suzy!
Mom

Jean said...

Dear Suzy--
Thank you much for your latest blog input! In a way, it's hard to read what you're continuing to go through but, in another way, it's an amazing gift to be able to read your words that let us be closer to understanding what it's like for you with each passing day.You truly are a warrior on a battle field, and you surely deserve all the support that other people (such as another warrior, Dr. Sprawls for instance)can give you.You'll soon be here in Maine for ten days with us and so many others who love you as we do. Beyond that, we look forward to the entire month of March, when Mom, Nancy and I will be in Florida with you.

I love you so much--
Free

Stuart said...

We can't wait to be with you and so many others in January, Suzy. It must feel so good to be so near the end of you regimen and to not have those chemicals to deal with any more. I hope the burns are feeling better by now.

Delia is home from school and we're picking up Emma tomorrow. It'll be good to have the family home. We're all looking forward to seeing you!

We all love you so much. Sending big hugs your way. Please share with Kenny!

Love,

Stuart

Anonymous said...

Hi Sister Suz'!
You have shared a ton of info with all of us which really keeps us in the loop, but also let's us hear your thoughts and perspective on this long arduous journey that you have had to endure these past 11 months. You write SO well too.....so easy to read and understand and I really try and feel what you are feeling. I only wish I could take some of this away from you and ease the burden and pain....just know I will always be trying.
As I say almost everytime I talk to you....you are such an inspiration to so many. Your positive attitude, preserverence, and utter commitment to kicking this thing in the butt is more than admirable.
I love you so much, Nancy