Saturday, December 24, 2011

HAPPY CHRISTMAS EVE!!

Don't be afraid to give your best to what seemingly are small jobs.  Every time you conquer one it makes you that much stronger.  If you do the little jobs well, the big ones will tend to take care of themselves.  ~Dale Carnegie

Je suis tout fini!  Mimi ni wote kumaliza!  (That’s French and Swahili for “I am all finished!”)  I was in French and Swahili mode this morning because we’re trying to think of a name for our boat, so I was trying to come up with something cute in French or Swahili – no luck.  We’re open to suggestions in English or any language.  It can’t be too long because the transom isn’t too wide. 

Anyway, that’s neither here nor there!  I finished radiation therapy on 12/20, and I am so happy to be done with it.  They even gave me a cute diploma signed by radiation oncologist and the nurses and technicians at the Viera center!  I’m still coping with some really nasty burns, which is quite a drag, but they ARE actually starting to heal now that the assault of the radiation has been terminated.  I actually had to go back to Space Coast Cancer Center on Wednesday so the nurse practitioner could look at the wounds and make sure they’re not getting infected (they’re not).  She was really nice and gave us some pointers on using the Domeboro soaks and the Silvadene cream.  It’s a tedious process; it takes Kenny about an hour per session to remove the bandages and then soak the various areas and then re-bandage them.  He’s such a trooper.  I just lay on the bed on a doubled-up towel, and he puts a huge pad (5 x 9”) soaked in the Domeboro powder on my chest area and then re-soaks the area every few minutes.  Then I have to roll onto my side so he can do the same process on the burns under my arm.  When we’re all done soaking, he has to apply the Silvadene cream (I have a huge tub of it now) and then apply new bandages.  I now have 4 large (3 x 4”) pads covering the 4 worst burns.  I’m tired of it all, but at least we’re finally starting to see some progress/healing.

Still having problems getting my INR stabilized.  On 12/16/11 it was 1.5, but I didn’t actually get those results until 12/19 because it was too low to register on their machine so they had to do a regular blood draw (instead of a finger prick) and send it across the hall to the lab.  They said somebody would call me that afternoon with the results.  Nobody ever did.  And the office was closed that afternoon for their Christmas lunch, so I couldn’t call them.  Anyway, I got the results on Monday and she said to increase my dose to 7 mg/day.  Then I had it rechecked on Wednesday -- it was 3.0!  Geez!  Enough already!  (It’s supposed to be between 2 and 3).  Back down to 6.5 mg/day and recheck on 12/28. 

My hair is coming back, but it’s dreadful.  I can’t explain it other than to say it is:  gravity-defying, reach-for-the-ceiling, looks-like-I-stuck-my-finger-in-a-socket, mad-professor-type hair!  It sticks straight up in places, straight out in others, and has bald patches in others.  Seriously contemplating shaving my head again and starting over.  In my online support group, some of the other women did that and said it came in much better the second time.  What have I got to lose?!  Another woman said she just cut off about half an inch, all the funky curls, and then it started laying down better.  I think I’ll try that first.  Meanwhile, I’ll just continue to wear bandanas – in every color imaginable! 

Well, it is NICE to have my body back and feel in control once again.  They cut, poisoned, and burned it all they wanted.  I didn’t exactly go “there” kicking and screaming.  I did have my serious doubts and reservations about going the “conventional” route, but “they” (the big “they”) dangled the bait and convinced me that that was what I needed to do.  I bit, and the rest is history.  I don’t really have any real regrets at this point, although it was a very rough journey – for me, for Kenny, and for my family.  I’m absolutely convinced the cancer is GONE and very hopeful that it will NEVER EVER return.

Now it’s time for me to take charge of my body again and start doing healthy things once again, which I’m actually very much looking forward to.  Eating healthy and exercising are very high on the priority list for the new year!

We’re enjoying a relaxing Christmas Eve afternoon, and I hope you all are, too.  Kenny just finished doing my soaking and bandaging; we watched a Christmas movie while doing it.  I’ve already cut up the veggies for dinner tonight, which is going to be lobster, over-roasted veggies, and wild rice, with a nice bottle of Cabernet.  Tomorrow morning we will have lobster omelettes for breakfast.  Dinner tomorrow afternoon will be a turkey breast (cooked in the crockpot), awesome sausage and sage stuffing with sausage, celery, onions, cranberries, apples, etc. (I already made it), mashed sweet potatoes with honey and applesauce, little white onions, and steamed veggies.   Now we’re going to go outside and enjoy what’s left of the beautiful afternoon – it’s sunny and 80 degrees here! 

I hope you all have a very Merry Christmas and a wonderful New Year!  Thank you ever so much for cheering me on this past year – for all your love and support and encouragement!  Knowing that you’re all out there being my cheerleaders really helps me tremendously!  It helps me maintain a positive attitude and stay focused.  Just because my treatment is over doesn’t mean my “battle” is over.  Cancer changes your life forever.  And I have to remain vigilant and conscientious about my lifestyle choices, etc.  So keep sending those positive thoughts!  We sure do appreciate them!  HUGS TO EVERYBODY! 

You know you’re a cancer patient……when you let nearly everyone who comments on your "cute, daring hairstyle" know that this isn't a fashion statement. I am so ready to have my "old" hair back!

My diploma

Our Christmas tree

Some of our Christmas decorations

The dogs on Christmas Eve

Christmas Eve

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!

Sunday, December 4, 2011

More than half way through radiation!

My life has a superb cast but I can't figure out the plot. -- unknown

I’ve been feeling so good and so “normal” that I totally forget about writing in my blog!  Just happened to think of it.  It will probably be pretty short because I don’t have much to report.  It was a relatively uneventful week as far as radiation goes.  It all went pretty smoothly, even on the 3 days Dr. Sprawls was the “doctor on site.”  In fact, he was EARLY on one of the days!  I couldn’t believe my eyes…..and told him so.  He laughed.  I was supposed to see Dr. Bryant (radiation onco) on Wednesday, but she was out sick with laryngitis, so the appointment was rescheduled to Friday, but she was still out sick.  Guess I’ll see her this week.  I want to show her the itchy rash/burn I have all over my chest and see if there’s something a little more effective to use on it.  I had been using aloe every day.  On Friday, Melissa (one of the techs) gave me some samples of an ointment to try.  It helps but doesn’t alleviate the itching for very long. 

I had my INR checked again on Friday, and it was low at 1.4 (supposed to be between 2 and 3).  Not sure why it was low, but they upped my warfarin dose to 6 mg/day, and I’ll have to have the INR checked again next Friday. 

On Friday we also changed campgrounds – moved from Wickham Park in Melbourne back up to Kars Park in Merritt Island.  We really enjoyed our stay at Wickham Park, but the snowbirds were starting to take over, and we couldn’t keep our site past Dec. 2nd.  It’s good to be back up in the central part of the county again.  I think it will take me about 15-20 minutes longer each way to drive to radiation, but I only have 12 more sessions left, so I think I can handle it.  Yup, 18 down and 12 to go!  Woo hoo!!

Some friends of ours from the Keys came to visit us Friday afternoon, which was fun.  We hadn’t seen them in several years, so it was fun getting caught up on things. 

Our good friends, Barbara and Brian, brought their RV to Kars for the weekend, too, so it’s been fun spending time with them.  Barbara and I went to some yard sales yesterday and then did a little “retail therapy.”  Barbara found a fondue pot at one of the yard sales, so we cooked shrimp in that last night, which was delicious.  Brian cooked some steaks on the grill, and we had salad and steamed veggies with the “surf and turf.”  Sat outside by the river and had a wonderful evening.  Today we went to the Cocoa Village Craft Fair and had fun walking around there doing some Christmas shopping. 

And now I can’t believe it’s Sunday night already and the weekend is just about over.  WAAAAHHHH!  How come the weekends go so fast??  Oh to be retired……can’t wait for the day…….  I love my job, though, so I’m not going to complain (too much…..)

I guess that’s about it for now folks.  Not much other news to report.  Hugs to everybody!

You know you’re a breast cancer patient when……your chest is flatter than your stomach!